You are on page 1of 0

A guide for family and

other unpaid caregivers


who care for an adult or
senior with disabilities
Washington State Department
of Social and Health Services
Aging and Long-Term
Support Administration
Family
Caregiver
Handbook
Caregivers Bill of Rights
I have the right:
To take care of myself. This is not an act of selshness. It will enable me to take better
care of my loved one.
I have the right:
To seek help from others even though my loved one may object. I recognize the limits of
my own endurance and strength.
I have the right:
To maintain facets of my own life that do not include the person I care for, just as I
would if he or she were healthy. I know that I do everything that I reasonably can for this
person, and I have the right to do some things for myself.
I have the right:
To get angry, be depressed and express other difcult emotions occasionally.
I have the right:
To reject any attempt by my loved one (either conscious or unconscious) to manipulate
me through guilt, anger or depression.
I have the right:
To receive consideration, affection, forgiveness and acceptance from my loved one for as
long as I offer these qualities in return.
I have the right:
To take pride in what I am accomplishing and to applaud the courage it sometimes takes
to meet the needs of my loved one.
I have the right:
To protect my individuality and my right to make a life for myself that will sustain me
when my loved one no longer needs my full-time help.
I have the right:
To expect and demand that as new strides are made in nding resources to aid physically
and mentally impaired persons in our country, similar strides will be made toward aiding
and supporting caregivers.
First appeared in Jo Hornes book Caregiving: Helping an Aging Loved One
(AARP Books, 1985)
Table of Contents
Introduction ...................................................................................................1
Changing Roles and Relationships ...............................................................2
Safeguarding the Care Receivers Dignity and Choice ...................................2
Caregiving and Family Relationships ............................................................3
Getting the Information You Need to Provide Quality Care ..........................3
Learn About the Care Receivers Disease or Condition ..................................3
Working with Doctors ...............................................................................4
Providing Day-to-Day Care............................................................................5
Bathing ....................................................................................................5
Shaving ....................................................................................................6
Mouth care ..............................................................................................6
Denture Care ............................................................................................6
Dressing ...................................................................................................7
Hair care ..................................................................................................7
Help with Eating .......................................................................................8
Incontinence and Toileting .........................................................................9
Helping with Toileting ............................................................................. 10
Skin Care .................................................................................................. 11
Bed Sores ............................................................................................... 12
Lifting or Moving a Person ........................................................................ 13
How to Transfer a Person ......................................................................... 13
Proper Body Mechanics When Lifting ....................................................... 14
Managing Medications.............................................................................. 15
Working With The Doctor And Pharmacist ................................................ 15
Setting Up a Schedule ............................................................................. 17
Tips For Managing Medications Safely ...................................................... 18
Finding Less Expensive Medications .......................................................... 19
Dealing with Challenging
Personalities and Behaviors While Providing Care ....................................... 19
Tips and Suggestions on Dealing with Difcult Behaviors ........................... 19
Challenging Behaviors and Dementia ........................................................23
Safety in the Home ...................................................................................... 24
Controlling the Spread of Infection ............................................................ 24
Immunizations ........................................................................................ 25
Home Safety ............................................................................................. 25
Preventing Falls ....................................................................................... 25
General Home Safety Tips........................................................................ 27
Home Safety Tips For People With Dementia ............................................. 28
Enhancing Daily Life .................................................................................... 29
The Importance of Social Connections ...................................................... 29
Senior Centers and Adult Day Centers ...................................................... 29
Keeping Your Mind Active .......................................................................30
The Importance of Good Nutrition ........................................................... 31
The Importance of Physical Activity .......................................................... 32
The Emotional Challenges of Caregiving ................................................... 33
The Importance of Emotional Support ...................................................... 33
What Is Good Self Care? .........................................................................34
Managing Stress ..................................................................................... 35
Depression .............................................................................................36
Grief and Loss......................................................................................... 37
Hospice Care ..........................................................................................40
When You May Need Professional Help ....................................................40
Adult Abuse ...........................................................................................40
Where to Turn When You Need Help ......................................................... 41
Asking For Help From Family And Friends .................................................. 41
How to Ask For Help ............................................................................... 41
Family Caregiver Support Program ............................................................ 42
Family Caregiver Counseling .................................................................... 42
Caregiver Training ...................................................................................43
Caregiver Support Groups .......................................................................43
Respite Care ...........................................................................................43
Information About Services ......................................................................43
Working With Your Employer ....................................................................44
Help from Community Services and Programs for the Care Receiver ...........44
Finding Local Services .............................................................................. 45
Choosing Residential Care:
When Care at Home is No Longer Possible................................................46
Adult Family Homes and Assisted Living Facilities .......................................46
Nursing Homes (Facilities) ........................................................................ 47
Retirement Communities/Independent Living Facilities ................................ 47
Continuing Care Retirement Community (CCRC) ........................................ 47
Paying for Services or a Care Facility ..........................................................48
Medicare ..................................................................................................48
Medicaid ..................................................................................................48
Other Insurance Programs .........................................................................49
Long-Term Care Insurance .......................................................................49
Veterans Benets ...................................................................................49
Planning for Tomorrow ...............................................................................50
Financial Planning ...................................................................................50
Legal Planning ..........................................................................................50
Wills ...................................................................................................... 51
Power of Attorney ................................................................................... 51
Advance Directives .................................................................................. 51
Living Wills Or Healthcare Directives ......................................................... 52
Physician Orders for Life-Sustaining Treatment (POLST) or
Do Not Resuscitate (DNR) ........................................................................ 52
Durable Power of Attorney for Health Care ............................................... 52
Guardians ............................................................................................... 52
Consult an Attorney ................................................................................ 53
Have And Keep An Inventory ................................................................... 53
Ordering Publications ..................................................................................54
Aging and Long-Term Support Administration Website ..........................54
Introduction
Tis booklet is full of ideas and
suggestions, information, and
additional resources on a variety
of topics that can help you with
caregiving now and in the days ahead.
With careful planning, good self-
care, and a knowledge of what help
is available, you will be a better
caregiver for as long as it is needed
and help the care receiver remain at
home as long as possible.
Please note: We have used the term care
receiver to refer to the person you are caring
for and have varied the pronouns he and she
when referring to the care receiver throughout
the book.
To nd the number for
your local Family Caregiver
Support Program, call
toll-free 1-800-422-3263 or
nd them online at:
www.altsa.dshs.wa.gov
(click on Find Local Services)
The Family Caregiver
Support Program
You will see the Family Caregiver Support
Program referenced throughout this
booklet. Te Family Caregiver Support
Program ofers invaluable support, services,
and resources for family and other unpaid
caregivers. Services are free or low cost and
include:
Information and help getting services for
caregivers and care receivers.
Caregiver support groups and counseling.
Caregiver training and education.
Respite care.
See page 42 for more information about
these services.
Internet Resources
Tere are many internet resources
referenced throughout the booklet. Any
link referenced in this booklet can also be
found through the Aging and Long-Term
Support Administration (ALTSA) website at
www.altsa.dshs.wa.gov (click on Caregiver
Resources).
F AMI LY CAR E GI V E R HANDB OOK 1
Treat him with dignity.
Listen to his concerns.
Ask for his opinions and let him know
they are important to you.
Involve him in as many decisions as
possible.
Include him in the conversation. Dont
talk about him as though hes not there.
Dont forget that youre talking to an
adult, even if he needs a great deal of care.
No adult wants to be treated like a child.
Respect her right to make choices.
Making choices gives us a sense of control
over our lives. Let her decide what and
when to eat, for example, if she is able.
If she has dementia, ofer simple choices.
If she wants to wear the same shirt
everyday, use a towel over her clothes and
wash the shirt each evening.
If a choice seems silly or unimportant to
you, try to see why it is important to her.
If she is making a choice that may be
dangerous to her, try to negotiate possible
safer solutions.
Caregiving can bring changes to your
relationships with the care receiver,
family, friends, and work life. Tis is a
time when respectful, open, and honest
communication will be very necessary to
navigate all of the life changes that come
with caregiving.
Safeguarding the Care
Receivers Dignity and Choice
Every person has a basic human need
and right to be treated with respect and
dignity. Tis need doesnt change when a
person becomes ill or disabled - it often gets
stronger.
You know the person you care for. You know
the whole person, his likes and dislikes,
strengths and weaknesses, and his wants
and needs.
Its easy to slip into a protective role when
you care for someone else, especially a
family member. You need to watch yourself
and:
Guard against overprotecting the person
or taking over for him.
Allow him the freedom to make decisions
about his own life and choose what and
how he wants things done.
2 F AMI LY CAR E GI V E R HANDB OOK
Changing Roles and Relationships
Caregiving and Family
Relationships
Te caregiving role can impact other
relationships within the family. You are not
alone! Many of the issues and challenges you
may be facing are common to many families.
Call your local Family Caregiver Support
Program and talk with their experienced,
caregiving experts for some practical,
supportive advice, tips, and additional
resources to help work through any issues
you are facing.
Additional Resources
Visit the website http://extension.
oregonstate.edu/catalog (click on family
and home and then aging) to fnd the
following articles by Vicki Schmall.
Coping with Caregiving, How to Manage
Stress when Caring for Elderly Relatives
Aging Parents: Helping When Health Fails
Sharing the Responsibilities of Parent Care:
Sibling Relationships in Later Life
Getting the Information You
Need to Provide Quality Care
Learn as much as you can about the care
receivers condition. Tis will give you a
better idea of what care is needed now and
what to prepare for in the future. Te care
receivers doctor is an important source of
information.
You can also do some research at the library
or on the internet to learn as much as you
can about the condition and what to expect.
Most chronic diseases or conditions have
national organizations with websites. Tese
sites are a good place to start your research.
Use your favorite search engine to fnd them.
Fill in the disease name with the words
national organization for your search.
F AMI LY CAR E GI V E R HANDB OOK 3
Encourage Independence
Self esteem often suffers when people
lose some level of independence
because of illness or disability. The care
receiver may feel worthless or like shes
a burden to you. Your attitude can have
a positive effect on her sense of worth
and independence.
View your role as a helper instead
of a doer. Even if you can do things
faster or better, encourage her to use
the skills she still has. Skills that arent
used will be lost.
Encourage her to do as much as she
can herself.
Be fexible.
Divide tasks into smaller steps. Big
steps can lead to getting easily
discouraged.
Provide plenty of encouragement
and positive feedback. Give praise
for trying. Especially when a persons
abilities are limited, a sincere well-
done is often appreciated.
Provide ways for her to feel needed.
Look for gadgets or assistive devices
that can help her stay as independent
as possible.
4 F AMI LY CAR E GI V E R HANDB OOK
Working with Doctors
Being prepared for a visit to the doctor
helps you and the care receiver get the
most out of the appointment and the
information you need. To make the most of
your visit:
Be a strong advocate for the care receiver.
Bring a prioritized list of concerns and
questions. Time with a doctor these days
is usually short. Start with what is most
important.
Take a notepad or tape recorder with you.
It is easy to forget things when time is
limited or you are anxious.
Speak up. Ask questions. If you dont,
your doctor may think you understand
everything that was said. Ask for written
directions if you need them or have the
doctor draw a picture if it is something
you dont understand. Dont leave until
you understand what to do next.
If you have doubts about a diagnosis or
recommended treatment, get a second
opinion.
Additional Resources
After Your Diagnosis Finding
Information and Support from the
Agency for Healthcare Research and
Quality. Available on-line at
www.ahrq.gov/consumer/
diaginfo.htm or call 1-800-358-
9295.
A Guide for Older People:
Talking with Your Doctor from
the National Institute on Aging.
Available on-line at www.nia.nih.
gov (click on publications) or by
calling 1-800-222-2225.
Questions to Ask the Doctor(s)
q What can we expect as the normal
progression of the disease?
q What type of physical and emotional care
will she need now and as the disease
progresses?
q Are there any serious signs or symptoms
to look for and what needs to be reported
to the doctor.
q Will you need any special training in order
to help with care? If so, what is the best
way to get it?
q What are the best strategies for managing
pain or other uncomfortable symptoms?
q What is and is not treatable?
q Are there any assistive gadgets or
devices that could help her remain as
independent as possible?
q Are there any additional services or
resources that would be helpful for both
of you?
F AMI LY CAR E GI V E R HANDB OOK 5
Providing Day-to-Day Care
Personal care is personal.
Everybody does these activities diferently.
Try to use the same routines she is used to.
Encourage independence.
Be a helper instead of a doer. Encourage her
to use the skills she still has. Divide tasks
into smaller steps and look for gadgets that
increase independence.
Give praise for trying.
Especially when her abilities are limited, a
sincere well-done is appreciated.
Does the care receiver have Alzheimers or
another form of dementia? Tere are many
additional tips and suggestions that are
specifc to providing care to a person with
dementia. Help is available! See page 23 for
several resources to get you started.
Bathing
A bath serves many purposes for the care
receiver. It cleans the skin, stimulates
circulation, provides movement and
exercise, and gives you an opportunity to
keep an eye out for any problems with her
skin.
Most people dont need a daily bath. If
bathing is difcult, do it only as often as
necessary. Do make sure that the hands,
face, and genital area are washed every day.
Bathing tips
Keep things as pleasant and relaxed
as possible. Youll both feel a lot better
afterwards.
Use less soap - too much soap increases
skin dryness.
Keep the room comfortably warm.
Respect her privacy. Keep her covered,
when possible.
If the person is able to get into a tub or
shower:
Ask her to sit on the edge of the tub. Ten
put both of her legs into the tub before
she stands up. Reverse the process when
shes getting out.
Make sure the foor is dry when helping
her in or out of a tub.
Lower the water temperature in the house
to 120 degrees.
If the person cant get into the tub or is
concerned about getting out of the tub, buy
or rent a bath bench and install a hand-held
shower attachment.
Consider getting professional
help to learn easier ways to
provide care.
Nurses, home health aides, physical,
occupational, and speech therapists are
trained to teach family members how to
provide care in the home. Ask the care
receivers doctor for a referral.
Shaving
Use an electric shaver when shaving
another person - its safer and easier. A
person taking blood thinning medication
should be encouraged to use an electric
razor.
If he wears dentures, put them in his
mouth before shaving him.
Have him in a sitting position, if possible.
Do not press down hard or move the
shaver too fast over his face.
Shave the most tender areas of the face
(the neck area below the jawbone) frst
and then move up to the tougher areas
of the face between the ears, nose, and
mouth.
Mouth care
Proper care of the mouth and teeth
supports the care receivers overall health
and helps prevent mouth pain, eating
difculties, speech problems, digestive
problems, tooth decay, and gum disease.
To help prevent decay and gum disease,
teeth should be brushed twice a day. Teeth
should be fossed at least once a day to clean
between the teeth where the brush misses.
If she has difculty grasping a toothbrush,
make the handle bigger with a sponge,
rubber ball, or adhesive tape. An electric
toothbrush may be easier to manage than a
manual brush in this case.
Denture Care
Inspect dentures for cracks, chips, or
broken teeth often.
Avoid hard-bristled toothbrushes - they
can damage dentures.
Do not put dentures in hot water - it can
warp them.
Do not soak dentures in bleach water.
Bleach can remove the pink coloring,
discolor the metal on a partial denture, or
create a metallic taste in her mouth.
Dont let dentures dry out - they lose their
shape.
Never soak a dirty denture. Always brush
frst to remove food debris.
Clean your dentures twice a day with a
denture brush and non-abrasive denture
cleaner.
After a meal, rinse your mouth out with
clean water to help remove food particles
caught in the teeth or gum lines.
Bathing Assistive Devices
There are a variety of other assistive
devices that make bathing safer and helps
the care receiver stay as independent as
possible. These include grab bars, long-
handled sponges, wash mits, a non-slip
mat, a bath thermometer to make sure the
water is not too hot, an infatable bathtub,
and rinse free bath products.
6 F AMI LY CAR E GI V E R HANDB OOK
Dressing
Let her choose what to wear. Lay out two
choices to simplify this for someone who
has some level of confusion or dementia.
Be fexible. Wearing a bra or pantyhose
may not be important to her, especially if
its an added hassle.
Consider easy-to-wear clothes with large
front fasteners (zippers or Velcro), elastic
waistbands and slip-on shoes.
If the person has a weak side, put the
painful or weak arm into the shirt before
the strong arm. When taking it of, take
out the strong arm frst.
Tere are several assistive devices to help
someone dress. Tese include Velcro in
place of buttons or shoelaces, zipper pulls
attached to a zippers metal tab to give
the care receiver added leverage in closing
and opening the zipper (a large paper clip
can also be used) and extended shoehorns
that allow her to get on her shoes without
bending over.
Hair Care
Getting out to a barber shop or hair salon
is enjoyable for many people who are ill or
disabled. Its often worth the extra efort
to take the person out for a haircut or
shampoo.
Many shops will make a special efort to
meet the persons needs, especially if they
know her or the family. If money is an
issue, beauty schools may do hair care for
no or low cost as a way for students to get
experience.
You may also be able to fnd someone to
come into your home. Try calling a local
nursing home for the name of someone
who makes home visits or put an ad in a
community bulletin board for what you
need.
Keep hair short and in an easy-care style.
Wash hair in the kitchen sink if the tub or
shower is too difcult.
Consider using one of the dry shampoo
products found in drug stores if hair
washing is impossible.
Getting out to a barber shop or
hair salon is enjoyable for many
people who are ill or disabled.
F AMI LY CAR E GI V E R HANDB OOK 7
Refusing to Eat
A reduced ability to taste and smell,
medications, depression, or constipation
are common reasons people refuse to eat
or have a poor appetite. All of these areas
should be checked out with a doctor or
other professional.
Check for tooth, mouth pain, or denture
problems if he suddenly loses interest in
eating. Encourage him to visit his dentist
as many problems are treatable.
Dont scold if he refuses to eat. Instead,
fnd out why. See if you can work together
towards a solution that works for both of
you.
Appetite often improves when mealtime
is relaxed and enjoyable.
See the Nutrition section on page 31 for
more information and resources.
Te following are assistive devices that can
help with eating.
Bendable straws are a help when someone
drinks in bed.
Tin, fat sponges will keep a plate from
sliding on the table.
Divided plates or plates with rims make it
easier to scoop food onto a utensil.
Larger handled utensils for weak or
arthritic hands. You can improvise these
by using foam-rubber hair curlers, sponge
rubber, or a washcloth.
A two handled cup.
A small blender or baby-food grinder can
be used right at the table and are easier to
clean than large blenders.
Help with Eating
When helping another adult eat, there are several ways
you can show respect and keep the care receiver as
independent as possible.
Always treat her as an adult.
Have her help you plan meals together.
Let her choose what she wants to eat and when.
Help her only when help is asked for.
Offer fnger foods if it is diffcult for her to use a fork
and spoon. For instance, scrambled eggs and toast can
be made into an egg sandwich.
Have her in a sitting position whenever possible and
keep her head slightly tilted forward.
Make sure she can see the food on the plate. The color
of the plate should contrast with the food.
Tell her what youre doing: Im giving you peas now.
She should remain upright for at least 20 - 30 minutes
after nishing a meal.
Sudden changes in eating or swallowing need to be
checked by a doctor.
8 F AMI LY CAR E GI V E R HANDB OOK
Incontinence and Toileting
Te care receiver may need help using the
toilet or may have lost control over her
bladder or bowel (incontinence). You may be
uncomfortable providing this type of care.
Tis section will give you suggestions to
help her maintain independence and make
your job easier.
Incontinence
Incontinence is not a normal part of aging
as many people still think. Incontinence
afects people of all ages. It is not easily
talked about and can lead to the care
receiver feeling isolated and even helpless.
If incontinence develops, its very important
to ask the doctor for a complete evaluation.
Many causes of incontinence are
treatable.
Sometimes simple changes in diet or
changing certain medications can cure
incontinence. More frequently, treatment
involves a combination of medicine, bladder
training, pelvic foor exercises, or absorbent
products.
If the person occasionally has accidents:
Suggest going to the bathroom on a
frequent, scheduled basis. Rushing after
the urge strikes can increase the chance
of accidents.
Make sure the hallways and bathroom are
well lit and clutter free.
Remember that accidents are very
embarrassing for her.
Stay calm and reassure her that its okay.
Keep a matter-of-fact approach. Let me
help you get out of these wet things.
Stay alert for signs of a urinary tract
infection. Any fever lasting longer than
24 hours should be evaluated.
Be aware that incontinence can be a
trigger for skin problems (see page 11 for
more information).
If accidents happen frequently:
Defnitely make an appointment with
the doctor for a thorough evaluation and
treatment recommendations.
Make sure the person is getting enough
fuid everyday to prevent strong urine
that can irritate the bladder.
Find out if she is taking any medications
that afect the bladder. Common over-
the-counter products like aspirin or
Excedrine contain cafeine, which
stimulates the bladder. A few high blood
pressure medications can irritate the
bladder.
F AMI LY CAR E GI V E R HANDB OOK 9
Additional Resources
National Association for Continence
P.O. Box 1019
Charleston, South Carolina 29402
1-800-BLADDER
www.nafc.org
Simon Foundation
P.O. Box 815
Wilmette, IL 60091
1-800-23SIMON
www.simonfoundation.org
International Foundation for
Functional Gastrointestinal Disorders
700 W. Virginia St., #201
Milwaukee, WI 53204
1-888-964-2001
www.aboutincontinence.org
Controlling stains and odor
Include cranberry juice in the diet to help
control urine odor.
Protect the mattress with rubber or
plastic sheets. Consider a breathable,
washable layer like sheepskin between
the sheet and the waterproof materials to
avoid excess sweating or a sticky feeling.
Remove soiled bed linens and clothing
quickly. If its impossible to wash them
immediately, rinse them in cold water.
Soak stained items in dishwashing
detergent to loosen stains.
Clean bedpans, urinals, and commodes
with household cleaners.
Avoid odors on furniture or other
household items by cleaning soiled areas
with a mild dilution of cold water and
white vinegar.
Protect furniture with disposable or other
waterproof pads.
Helping with Toileting
Toileting is a very private matter. It is a very
vulnerable and defenseless time for another
person. A reassuring attitude from you can
help lessen feelings of embarrassment and
discomfort.
Give him privacy
Look the other way for a few moments.
Leave the room (if it is safe to do so).
Allow him extra time to do what he can.
Be patient when a request for your time
comes when you are busy with other
things.
Make sure the environment supports
getting to the bathroom
Make sure the hallway and bathroom are
well-lit.
Keep the path to the bathroom clear and
free of clutter.
Keep needed items such as a walker or
cane nearby.
Place a night light in the bathroom or
leave a light on.
Toileting is a very private
matter. A reassuring
attitude from you can
help lessen feelings of
embarrassment and
discomfort.
10 F AMI LY CAR E GI V E R HANDB OOK
Te following assistive devices can help
with toileting.
Commodes are available to buy or rent
if its too hard to get to the bathroom.
Commodes are especially helpful during
the night.
Bedpans and urinals may be needed
if he cant get out of bed. Tey can be
purchased at medical supply stores and
larger drugstores.
Raised toilet seats and toilet risers raise
the height of the toilet seat making it
easier to get on and of of the toilet.
Disposable pads, briefs, and
undergarments to protect clothing and
bedding.
Constipation
Constipation is a common concern for many
people. Common causes of constipation are
some medications, not enough fuid and/
or fber in the diet, over use of laxatives,
lack of physical activity or immobility,
depression or grief, changes in routine,
diseases such as diabetes, Parkinsons
disease, multiple sclerosis, and spinal cord
injuries, hemorrhoids, or ignoring the urge
to have a bowel movement.
It is important to fnd out what is causing
the constipation. Call your doctor to help
evaluate and identify the right treatment.
In many cases, diet and life-style changes
help to relieve symptoms and prevent
constipation.
F AMI LY CAR E GI V E R HANDB OOK 11
A healthy diet can help prevent
constipation and keep skin healthy.
Encourage him to:
Get plenty of fuids. Drink 6-8 cups of
fuid per day, more when the weather is
hot or when exercising.
Cut down on alcohol and beverages
containing cafeine (tea, cofee, soda).
Make healthy food choices. Fiber is
especially important for good bowel
function.
Stay active to the extent possible.
Relax. Dont strain to empty the bladder
or bowel or sit on the toilet too long.
Skin Care
Skin is the frst line of defense a person has
to heat, cold, and infection. It is important
to help keep her skin healthy. Help her:
Keep as mobile as possible.
Keep skin clean, dry, and moisturized.
Eat a healthy, well-balanced diet, and
drink plenty of fuids.
Bed Sores
Immobility is the number one cause of bed
sores (also called pressure ulcers). People
who stay in bed for long periods or are in a
wheelchair are at the greatest risk.
Bed sores can also be caused when the skin
is weakened by:
Friction. Friction is caused when skin is
rubbed against or dragged over a surface.
Even slight rubbing or friction on the
skin may cause a bed sore - especially for
people with weak skin.
Dryness and cracking.
Age.
Irritation by urine or feces.
Lack of good nutrition or drinking
enough fuids.
Certain chronic conditions or diseases -
especially those that limit circulation.
Bed sores are a serious problem and, in
most cases, can be prevented by following
the steps listed below.
A bed bound person should change
position every two hours.
A wheelchair bound person should shift
her weight (or be helped to) in the chair
every ffteen minutes for ffteen seconds
and change position every hour.
Use mild soap and warm (not hot) water.
Rinse and dry well pat, dont rub.
Gently clean of urine or feces
immediately with mild soap and warm
(not hot) water.
If incontinence is an issue, avoid using
blue pads or disposable waterproof
underpads that hold moisture on the
skin. A waterproof cloth pad that can
be laundered and reused is a good
alternative.
12 F AMI LY CAR E GI V E R HANDB OOK
Potential Pressure Points
Look at the care receivers skin at least
once a day. Pay special attention to
pressure points.
Pressure points are indicated with circles in
the illustrations below.
What to look for
What a bed sore looks like depends on how
severe it is. Te frst signs of a bed sore
include:
Redness on unbroken skin lasting 15-30
minutes or more in people with light
skin tones. For people with darker skin
tones, the ulcer may appear red, blue, or
purple. If in doubt, compare the area to
the other side of the persons body.
Any open area - it may be as thin as a
dime and no wider than a Q-tip.
An abrasion/scrape, blister, or shallow
crater.
Texture changes - the skin feels mushy
rather than frm to the touch.
A gray or black scab. Beneath the scab
may be a bed sore. Do not remove the
scab. If a bed sore is beneath it, this
could cause damage or lead to infection.
Lifting or Moving a Person
Te care receiver may need physical help to
get around the house. She may need help to
get up from a chair or toilet, get out of bed,
or into a wheelchair. As always, encourage
her to do as much as she can herself!
How to Transfer a Person
Te following are steps to properly move a
person from one location to another. Tis is
referred to as transferring a person or just
a transfer. In this case, the person is being
transferred from a bed to a wheelchair.
Help him to roll towards the side of bed.
Supporting his back and hips, help him to
a sitting position with his feet fat on the
foor.
If you are using a transfer belt (see page
15), stand in front of him and grasp the
belt.
If you are not using a transfer belt, stand
in front of him and place your arms around
his torso.
Brace his lower extremities with your knees
to prevent slipping.
Tell him you will begin the transfer on the
count of 3.
On 3, help him to stand.
Tell him to pivot to the front of the
wheelchair with the back of his legs against
the wheelchair.
Flex your knees and hips and lower him
into the wheelchair.
Have him hold the armrests for support.
If you need more information or
individualized training on helping with
transfers, call the care receivers doctor. Tey
can discuss with you a referral to a physical
or occupational therapist for assessment
and training related to transfers. Tis
assessment and training is often covered by
insurance.
F AMI LY CAR E GI V E R HANDB OOK 13
If you think she may be
developing or have a bed sore:
Remove pressure from the area
immediately.
Recheck the skin in 15 minutes. If the
redness is gone, no other action is
needed.
If the redness is not gone or an open
area develops, call your doctor
immediately.
Do not massage the area or the skin
around it.
Do not use a heat lamp, hair dryer, or
potions that could dry out the skin
more.
Safety with transfers
If the person cannot help with the
transfer at all, you need special training
and/or adaptive equipment (e.g. a Hoyer
Lift) to lift and move him.
Dont ever try to lift
someone heavier
than yourself
unless youve had
proper training.
Te person
should never
put his arms
around your
neck during a
transfer. It can
pull you forward,
make you lose your
balance, or hurt your
back.
If you feel a strain in your lower back,
stop the transfer and get help.
Proper Body Mechanics When Lifting
If you will be helping someone get up or into a chair, bed, or bath, be kind to your back!
Remember... its the only one youve got!
Any time you lift or move a person, use proper body mechanics to prevent stress or injury to
your back. Think of yourself as an athlete. If youre on the injured list, youre out of the game.
Before lifting a person or moving anything, make sure you can lift or move it safely. Do not lift
a person or a load alone if it seems too heavy.
Spread your feet about shoulder width apart with one foot slightly in front of the other to
provide a good base of support.
Bend at the knees instead of the waist.
Keep your back as straight as possible.
Bring the person/load as close to your body as you can.
Lift with your legs, using your stronger set of buttock and leg muscles.
Keep your back, feet, and trunk together and do not twist at the waist. If it is necessary to
change your direction when upright, shift your feet and take small steps. Keep your back and
neck in a straight line.
When possible, pull, push, or slide objects instead of lifting them.
Helping her stand up
Clarify with her where she wants to go
and make sure you think she can get there
before helping her walk.
Before helping her stand, encourage
her to:
- Lean forward.
- Use a rocking motion as momentum
(if able).
- Move her legs of the bed or chair and
put her feet frmly on the foor.
Place your arms around her waist. Dont
let her pull on your neck.
- Use her glasses and/or hearing aids.
Its much easier to stand up from a high,
frm chair with arms than from a sofa or
overstufed chair.
14 F AMI LY CAR E GI V E R HANDB OOK
Te following assistive devices can help
with transfers.
A transfer belt is a belt made of sturdy
webbing or twill with a buckle or clasp on
it. Te transfer belt is placed around the
care receivers waist and is used to help
him transfer or walk. A transfer belt is
a good tool to have for any person who
needs help to transfer. If you do not have
a store purchased transfer belt, you can
use a regular wide belt with a clasp.
Transfer boards provide a secure and safe
surface for a person to slide from one
place to another. Transfer boards work
well for people that can use their arms to
scoot from one side to the other.
Lift cushions help a person with
decreased upper and lower body strength
to gently lower themselves into a chair
or sofa and give them a boost when
standing. Tese portable devices are
placed onto the seat of a chair and are
powered by a number of methods such as
electric power or air compressors.
Lift chairs are powered recliners that lift
and tilt forward, helping the person to
stand more easily and lower themselves
into a seated position.
Managing Medications
Careful medication management helps
prevent medication problems and makes
sure that medications do the job theyre
supposed to do. Tis sections will help you
manage medications safely.
Working With The
Doctor And Pharmacist
Many care receivers take several
medications and often see more than one
doctor. Keep a record (see next page) of all
the drugs she is using including prescription
drugs, OTC medications, vitamins, food
supplements, and herbal remedies.
Give her doctor and pharmacist this list. It
is also a good idea to list any drugs she is
allergic to or has had problems taking in the
past.
Hoyer lifts can be used with a care
receiver who cant bear weight or is
extremely heavy and cant be safely
transferred by their caregiver.
F AMI LY CAR E GI V E R HANDB OOK 15
Transfer boards work well for people
who can use their arms to move.
P
a
t
t
e
r
s
o
n

M
e
d
i
c
a
l

-

S
a
m
m
o
n
s

P
r
e
s
t
o
n
Keep a Record
Keep a record of all medications she is taking. Always bring it with you to doctor appointments.
Keep the list current and take it with you
to all doctor appointments. Tis helps avoid
the care receiver being given a new drug
that does the same thing as an existing
medication and helps prevent potential
drug interactions.
Drug interactions can:
Make people sick.
Cause symptoms that are mistaken for a
new illness.
Increase or decrease the efectiveness of
medicines being taken.
Te likelihood of drug interactions
happening increases with the number of
medications being taken.
Ask the doctor to review prescription
dosages at least once a year. Over time, her
need for a medication can change. A chronic
illness can improve or get worse. Older
people often need a smaller dose of a drug
because drugs stay in their system longer.
People who are small-sized or who lose
weight may also need smaller doses.
Medication Dosage Prescribing Date Color What its for Special
physician prescribed size & shape instructions
1.
2. etc.
What to Ask When a New
Medication is Prescribed
When the care receiver is prescribed a new
medication, you will want to ask the doctors
the following questions.
q What can we expect as the normal
progression of the disease?
q What is the medicine for?
q Are there any risks or side effects to taking
this medication?
q What does she do if side effects occur?
q Will this new medicine work safely with
prescription and OTC medicines she is
already taking?
q What are possible drug interaction signs to
look for?
q Will the medicine affect her sleep or
activity level?
q How often should she take it?
q How much should she take?
q How long should she take it?
q How do I know if the medicine is working?
q Should she take it with food or on an
empty stomach?
q Are there other special instructions?
Should she avoid alcohol, sunlight, or
certain foods?
q What should we do if she misses a dose?
q Is there a generic (not a brand name) form
available?
16 F AMI LY CAR E GI V E R HANDB OOK
Getting the medication
Get all prescribed and OTC medications
at the same pharmacy or drug store so the
pharmacist can maintain an up-to-date
list of all medications she is taking and
check for potential problems.
Read the label and insert carefully that
comes with a medication and stay alert to
special instructions, anything that should
be avoided, or possible side-efects of
the drug.
Signs of side efects can include:
Confusion and other memory problems
Dizziness, difculty walking, increased
falls
Anxiety
Upset stomach or vomiting
Changes in eating, sleeping patterns
Chills
Rash, hives, itching
Diarrhea, constipation
Fluid retention
Loss of energy
Dry mouth
Over-the-counter (OTC) medicines
Common OTC medications include pain
relievers (such as Tylenol and aspirin),
anti-infammatory drugs (such as ibuprofen
and Advil), cough syrups, antacids (such
as Tums and Pepto-Bismol), allergy relief
medicines, and laxatives. You can buy these
drugs without a prescription.
Although these medicines are considered
safe, they can cause reactions with other
medications. Its also possible that an excess
of an OTC medication can be toxic.
Setting Up a Schedule
An important part of managing medications is helping her remember what to take and when.
Make a chart. Write down the day and time that each medicine should be given.
Monday Tuesday Wednesday Thursday Friday Saturday Sunday
8:00 am
Noon
6:00 pm
Before bed
During the night
Read all
medication
labels carefully.
F AMI LY CAR E GI V E R HANDB OOK 17
Tips For Managing Medications
Safely
Never increase or decrease a medications
dosage without checking with her doctor.
Only give her a medication that was
prescribed for her.
Give the entire prescription even if
symptoms are gone unless your doctor
tells you otherwise.
Give medications with a full glass of water
unless instructions say to do otherwise.
Dont crush pills or capsules unless
you check with your pharmacist. Many
medications have a coating to protect
the throat or stomach lining. A crushed
pill could release all the medicine at once
instead of the way its intended. For this
same reason, dont allow someone to chew
pills or capsules unless youve checked
with the pharmacist that this is okay.
Dont cut pills in half unless they have a
line across the middle to show they can
be broken and you have checked frst with
the pharmacist. Ask the pharmacist if
the pills come in smaller doses or ask the
pharmacist to break them for you.
Trow away all medications that are past
the expiration date.
Store all drugs in a cool, dry area. Dont
store medications in the bathroom. Te
warm and damp conditions can cause
medications to deteriorate.
Te following assistive devices can help
with managing medications.
A pill container can be used to organize
pills to match your chart.
Multi-alarm pill boxes store medication
and provide reminder alerts to take
medications at prescribed times. Most
alerts come in the form of an audible
tone at specifc times of the day or
predetermined hourly intervals. Tese pill
boxes also ofer compartments to help
organize medications by day of the week
and time of day.
Talking medication bottles have a
recording mechanisms that lets you or
a pharmacist record a message that can
be played back anytime. Te recorded
message identifes bottle contents and
provides reminders concerning when the
medication should be taken.
Medication applicators help her apply
lotions and ointments on hard to reach
areas such as the back and feet.
Pill crushers and splitters split or crush
pills and tablets into a smaller size or a
powder.
Additional Resources
Caregivers Guide to Medications
and Aging from the Family Caregiv-
ers Alliance. Visit www.caregiver.org
and click on Fact Sheets and Publica-
tions or call 1-800-445-8106.
Medicines and You: A Guide for
Older Adults from the Food and
Drug Administration. Visit www.fda.
gov/cder/.
18 F AMI LY CAR E GI V E R HANDB OOK
Finding Less Expensive Medications
Te high cost of prescription drugs
continues to be a concern for many people.
Below are some valuable internet resources
for saving money on prescription drugs in
Washington State.
Visit www.rx.wa.gov and click on
Prescription Assistance Programs to
fnd out if you qualify for government or
private savings programs, to compare the
prices of the most commonly prescribed
drugs, and fnd links to Canadian
pharmacies.
Benefts Checkup (BCU) is a
comprehensive online service to screen
for federal, state, and some local public
and private benefts for adults ages 55
and over. BCU connects you to programs
that help pay for prescription drugs,
health care, utilities, and other needs.
BCU provides a detailed description of
the programs, contacts for additional
information, and materials to help
successfully apply for each. Visit their
website at www.benetscheckup.org.
Visit www.aarp.org/health/drugs-
supplements (click on Drug Saving Tool
under Health Tools) and fnd an on-line
consumer guide from AARP where you
can learn more about a variety of diferent
drugs, their efectiveness, and compare
prices.
Dealing with Challenging
Personalities and Behaviors
While Providing Care
Te stress of an illness or disability can
lead to a care receivers behavior becoming
difcult. His personality and behavior
may change because of the emotional
and physical changes he is experiencing.
A person who has always had a difcult
personality may become even more difcult.
First, make an appointment with the care
receivers doctor to rule out any medical
reason for difcult behaviors. Tis is
especially important if an unusual behavior
comes on suddenly for the care receiver.
Medication side efects, a urinary tract
infection, depression, and dehydration are
some common culprits of physical problems
leading to difcult behavior.
Tips and Suggestions on Dealing
with Difcult Behaviors
Although you cant always control the other
persons behavior, you can control your
response to it. An important goal when
dealing with any type of difcult behavior is
to remain calm and balanced.
Be patient with yourself. Youre doing
the best that you can do in a difcult
situation; blaming yourself wont help
solve the problem.
Focus on the behaviors that are difcult,
not the person.
Remember you have options, such as
asking for politeness or leaving the room/
area.
Practice a gentle assertiveness on your
own behalf. Standing up for yourself
avoids a buildup of resentment, hurt, or
angry feelings.
F AMI LY CAR E GI V E R HANDB OOK 19
Te following are some common difcult
behaviors caregiver face and some tips and
suggestions for handling a rough patch or
bad day.
It is important to note that at some point
difcult behavior can cross the line to
emotional, verbal, or physical abuse by
the care receiver. Tere is no reason or
justifcation for putting up with abuse.
If you feel you are being abused, get help
immediately.
Mental health agencies, hospitals, or
your doctors ofce can give you names of
counselors and mental health professionals.
You can also look in the yellow pages of the
telephone directory. You dont have to wait
until things get intolerable to beneft from
some knowledgeable advice and support
handling difcult behaviors.
If the care receiver has dementia, see page
23 for more resources.
Remember these ve Rs
when handling difcult
behavior:
Remain calm
Respond to the persons feelings
Reassure the person
Remove yourself
Return when you are calm
When a person who needs help refuses
to accept it
Most people dont like to admit they need
help. In the care receivers mind, admitting
he needs help can signal he is losing his
independence and abilities. Remember,
change is difcult for everyone. If the
person resists your help, be patient and
keep the following suggestions in mind.
Involve him as much as possible in
establishing his own care plan. Do
everything you can to understand how
and when he wants things done.
Assure him he has the fnal say in
decisions about his care. He may be more
willing to accept help if it is ofered in a
way that allows him to make decisions.
Reinforce that your aim is to work
together to keep him at home as long as
possible.
If at frst you dont succeed, try again.
Often if you wait 15 minutes and try
again, your help will be accepted.
Remind him that giving up a bit of control
in one area of life can often lead to more
independence in the long run.
Be patient. You may think you know
what has to be done and when. But, your
timetable may not be the right pace for him.
Call your local Family
Caregiver Support
Program for support
or referrals. See
page 43 for contact
information.
20 F AMI LY CAR E GI V E R HANDB OOK
Excessive complaints and angry
behavior
Illness and disability afect everyone
diferently. Some people become easily
irritated. Tey may seem petty and
demanding at times. Te person may fy
into a rage because you put too much cream
in his cofee. When he is losing control
over parts of his life, he may be desperately
looking for something he can still control.
Dont downplay his feelings.
Dont take the anger personally.
Saying Its no big deal wont help, it
may even make him more angry. Instead,
try something like, You seem really
frustrated. What can we do next time to
make it better?
Let him talk about his anger. Whats
making you feel so bad? You seem upset,
can I help?
Helping a Person Accept
a Home Care Aide
Introduce the idea slowly. Give her time to accept the idea.
Offer a trial period. She may be willing to try an aide for
a limited time, especially if she knows she can change her
mind later.
Sometimes people are more willing to accept in-home help
if it is presented as being for the caregivers benet. For
instance, someone to help you keep the house clean or do
the heavy work.
Encourage family and friends to let her know they think an
aide is a good solution.
Often people will listen to their doctor. Ask her doctor to
suggest a plan that includes an aide.
Often, the person may be concerned about the cost of
services. If you can address this issue, perhaps she will be
more willing.
Make an efort to respect demands that
may seem petty to you but are very
important to him. Remember, if he could
he would change the volume on the radio
himself or shave himself exactly how and
when he wanted.
Find something to agree about. Yes, the
mail carrier hasnt been coming as early
as he used to. Youre right, these sheets
are all wrinkled up.
Choose your battles.
If either of you loses control of the
situation, walk away. Take several deep
breaths, count to 10, or give a silent
scream while both of you cool of.
Look for patterns to the angry behavior.
Maybe the outbursts always come in the
late afternoon or on days when youre
in a hurry or stressed. Try to break the
pattern. If you can avoid the triggers that
lead up to an angry outburst, you can
reduce frustration for both of you.
F AMI LY CAR E GI V E R HANDB OOK 21
Anxious behavior
Chronic illness or disability may make
the person more anxious than usual.
She may worry about small details of her
medications, her blood pressure, or her
blood sugar levels. She may make constant
or unreasonable demands or refuse to allow
anyone but you to do something.
Anxiety may make her feel restless or dizzy,
she may be hot or have chills, or she may
feel like her heart is pounding. Anxiety can
also cause irritability, depression, insomnia
and poor concentration.
Identify if there is anything contributing
to anxiety such as too much cafeine,
smoking, watching crime shows on
television, alcohol, and decrease those
things.
Look for the feelings behind anxious
demands. A person with breathing
problems may demand that windows are
open on a cold day because she feels she
cant get enough air.
Use gentle touch to calm her. Reassuring
her that things are under control while
stroking her hand or the back of her neck
may help ease the anxious feelings.
Encourage her to:
- Breathe deeply.
- Spend 20-30 minutes doing some
kind of deep relaxation per day such
as meditation, prayer, deep breathing
exercises, or visualization.
- Choose some positive statements she
can repeat again and again that will help
calm her down when she is anxious.
- Get regular exercise.
- Stay well hydrated. Dehydration
contributes to anxiety.
You can also try to distract her so her
attention becomes focused on something
else. Sometimes disrupting the thought
pattern is enough to stop the repetitive
thoughts that are causing anxiety.
Disrespectful behavior
Calm yourself. Te natural response to
being treated disrespectfully is anger.
Take several deep, relaxing breaths. Wait
to respond until you can do so more
calmly.
Give clear feedback. Let the person know
what he has done that was disrespectful
and how it makes you feel.
Be specifc, use I statements, and keep
your comments brief and factual. When
you use that tone of voice with me, it
upsets me and I feel unappreciated.
Set clear boundaries and communicate
politely how you wish to be treated.
Respond in a positive rather than a
negative way.
Listen to what the person might actually
be saying behind the disrespectful words.
Ask the person Whats wrong? Did I do
something to ofend you? If I did, Im
sorry. Tis can set the stage to resolve
rather than fuel the situation.
22 F AMI LY CAR E GI V E R HANDB OOK
Additional Resource
Counting on Kindness:
The Dilemmas of Dependency. (1991).
Wendy Lustbader. The Free Press, New York.
Visit www.lustbader.com.
Challenging Behaviors and
Dementia
Does the care receiver have Alzheimers
or another type of dementia? Its not
uncommon for a person with dementia
to become anxious or agitated, to repeat
questions over and over, to pace or wander,
to be suspicious, or to have hallucinations
or delusions. Such behaviors are upsetting
to the person with the dementia and
frustrating for the caregiver. Now is the
time to get more information and support.
Reach out to organizations that specialize
in working with people with dementia for
more specifc and detailed information
about understanding and responding to
challenging behaviors. Tese organizations
ofer information over the phone, written
materials, and connect you to local
education and support groups that can help
and support you as time goes on.
Organizations
Alzheimers Association, Western and
Central Washington Chapter. Call 1-800-
848-7097, 206-363-5500, or on-line at
www.alz.org/alzwa.
Alzheimers Association, Inland Northwest
Chapter. Call in Spokane 509-473-3390,
Southeastern Washington 509-713-3390 or
on-line at www.alz.org/inlandnorthwest/.
Te national Alzheimers Association has a
24-hour hotline at 1-800-272-3900.
Alzheimer Society of Washington. Call
them toll free at 1-800-493-3959 or on-line
at www.alzsociety.org.
Additional Resources
Helping Memory-Impaired Elders: A Guide for
Caregivers, by V.I. Schmall and M. Cleland.
Discusses dementia in later life and ways
to cope more efectively with the resulting
changes. Call 1-800-561-6719 to order or
read on the internet at http://extension.
oregonstate.edu/catalog (click on family
and home).
Alzheimers Disease Education and Referral
(ADEAR) Center. PO Box 8250, Silver
Spring, MD 20907-8250 has a multitude of
books, pamphlets, videotapes on caregiving
and dementia on their website at www.nia.
nih.gov.
Te 36-Hour Day: A Family Guide to Caring
for Persons with Alzheimer Disease, Related
Dementing Illnesses, and Memory Loss in Later
Life. Nancy L. Mace, and Peter V. Rabins.
Mass Market Paperback (2001) (book).
Caregivers Guide to Understanding Dementia
Behaviors from the Family Caregiver
Alliance. Read on-line at www.caregiver.
org (click on Factsheets and Publications).
Alzheimers organizations are a
great resource for information and
emotional support when dealing
with challenging behaviors.
F AMI LY CAR E GI V E R HANDB OOK 23
Controlling the Spread of Infection
Caregivers must be constantly alert to the
need for cleanliness. It is vitally important
to prevent infections, both for you and
the care receiver. A care receiver can be at
greater risk of infection because his immune
system can be weakened by his disease or
condition.
Simple infection control practices can help
you control the spread of germs. Most
infections are spread through direct contact
from one person to another or coming into
contact with something an infected person
has used or touched.
Basic infection control focuses on killing
or blocking direct or indirect contact with
germs so they cant cause harm.
Hand Washing
It is impossible for the human eye to see
germs. Just looking at your hands will not
tell you whether they are contaminated with
germs. You will want to wash your hands
frequently throughout the day. For example,
wash your hands after caring for the care
receivers body or going to the bathroom.
Wearing Disposable Gloves
Wearing disposable gloves is another way to
control the spread of germs. You will want to
use disposable gloves made of latex or vinyl.
Dont use gloves if they are peeling, cracked,
discolored, or if they have holes or tears
in them. Trow them away after each use.
Change gloves between tasks if they become
contaminated with germs.
Safety in the Home
1.
2.
3.
4.
24 F AMI LY CAR E GI V E R HANDB OOK
How to Remove Soiled Gloves
Change gloves between tasks if they
become contaminated.
Cleaning and disinfecting
Tere are two steps to clean and disinfect
any surface. Clean and scrub the surface
with soap and water. Ten, disinfect the
area with a bleach solution or a commercial,
household cleaning solution.
One teaspoon bleach to one gallon of
water makes a good disinfectant bleach
solution. Use the solution within 24
hours. Wear gloves if your hands will have
frequent contact with the bleach solution.
Also check the bleach label for directions
and warning statements.
Areas you will want to clean and disinfect
include laundry contaminated with body
fuids, kitchen surfaces, bedpans, or
commodes.
Immunizations
Immunizations are another way to protect
yourself and the care receiver against
diseases. Make sure you and the care
receiver get all of your recommended
immunizations.
Talk with your health care provider or check
out the additional resources listed below to
know what immunizations you may need.
Te Center for Disease Control (CDC)
recommends the following vaccines for
adults.
Tetanus-Diphtheria Vaccine (all adults,
every 10 years).
Infuenza (Flu) Vaccine (adults 50 and
older).
Pneumococcal Vaccine (adults 65 and
older).
Hepatitis B Vaccine (adults at risk).
Measles-Mumps-Rubella (MMR) Vaccine
(susceptible adults).
Varicella (chickenpox) Vaccine
(susceptible adults).
Home Safety
Illness and disability increase the risk
of accidents in the home. Unfortunately,
people often wait until an accident happens
before they make changes. Act now to
provide a safer home.
Preventing Falls
Falls are a major health problem for older
adults and can be of concern for people with
certain developmental disabilities or chronic
conditions.
Many things can lead to falls, including:
Vision and hearing problems.
Impaired balance or awareness.
Certain medications.
Reduced strength.
Alcohol or drug abuse.
Hazards in the home such as clutter or
throw rugs.
Many adults develop a fear of falling
(especially if they have fallen before) or lose
confdence in their ability to move around
safely. Unfortunately, this fear can limit daily
activities and mobility and increase feelings
of dependence, isolation, and depression.
F AMI LY CAR E GI V E R HANDB OOK 25
One teaspoon bleach
to one gallon of
water makes a good
disinfectant bleach
solution. Use the solution
within 24 hours.
Footwear
All adults should have sturdy walking
shoes that support the foot. Shoes that
tie or supportive sneakers with thin, non-
slip soles and velcro fasteners to adjust for
swelling are best. Slippers, high heels, and
jogging shoes with thick soles should be
avoided.
Reducing fall hazards in the home
Remove clutter from halls and stairs.
Remove throw rugs that arent securely
held down.
Keep foors dry and in good repair.
Use night lights in bedrooms, bathrooms,
and hallways.
All rooms should have good lighting,
especially hallways and stairs.
Stairs should have a strong hand rail.
Vary the colors at foor level so you can
see where steps and edges are.
Keep things used most often on lower
kitchen cabinet shelves.
Use hand rails in tubs and next to toilets.
Use safety toilet seats to make standing
and sitting easier.
Use mats in showers and tubs.
What to do if a person is falling
Dont try to stop the fall. You could both
be injured.
Try to
support his
head and
gradually ease
him onto the
foor.
If you are behind
him, let him
gently slide down
your body.
There are a great number of simple and practical
things you can do to reduce the risk and fear of
falling. Encourage her to:
Have routine eye exams and wear her glasses.
Have routine hearing exams and wear her
hearing aides.
Do strengthening or balance exercises*.
Use a walker or other needed assistive devices.
Exercise*.
Get up slowly after sitting or laying down.
Reduce fall hazards in the home.
Have medications reviewed by her doctor.
* She may need to talk with her doctor before beginning
an exercise program.
Strengthening and balancing
exercises help reduce the risk of falls.
26 F AMI LY CAR E GI V E R HANDB OOK
Preventing Falls
If the person falls and is on the foor
Ask him if he is okay. Check for bleeding.
If he appears injured, is in pain, or
cant move any part of his body, call
911 immediately. Many people are
embarrassed and may want to get up or
tell you everything is fne even if hurt.
Observe him carefully.
If he isnt injured, ask him if he thinks he
can get up safely.
To help him stand up from the foor, bring
a chair close to him. Ask him to roll onto
his side, get onto his knees, then support
himself with the chair seat while he
stands up.
If he needs more than a minimal amount
of help to get up, do not attempt to lift
him by yourself. No one can safely lift
an average-sized person from the foor
without help.
Te following assistive devices are helpful
for fall prevention.
Socks and slippers with anti-slip material
on the bottom.
Anti-slip matting for tubs and bathroom
foors.
Grab bars to provide stability and support
in bathrooms and other areas.
Wheelchair anti-rollback devices to stop
a wheelchair from rolling away when he
stands or lower himself into a chair.
Chair, bed, and toilet alarms to signal
when he leaves a bed, chair, wheelchair, or
toilet unattended.
Hip protectors to protect his hip from
injury in the event of a fall.
Bedside cushions to help reduce the
impact of a fall if he rolls out of bed.
General Home Safety Tips
Keep emergency phone numbers and your
home address and phone number posted
by the phone. People often forget this
information in an emergency.
Know where any advance directives (see
page 51) are located and have them readily
available in case of emergency.
Consider enrolling in a CPR class. Call the
American Heart Associations toll-free
number 1-800-242-8721 or visit their
website at www.heart.org/heartorg/ and
click on CPR & ECC for a list of local
classes. Your local fre department or Red
Cross chapter may also ofer classes.
If the person lives alone
You can purchase an electronic device
that enables someone to call for help in
an emergency. Te system is connected
to the phone or the person may wear a
portable help button. When the system
is activated, staf at a response center will
respond.
Tere are many diferent products on the
market such as Lifeline (1-800-380-3111)
or Safe Alert (1-800-655-6872) or other,
more local services. You can also call your
local Family Caregiver Support Program for
information about cost and availability.
FAMI LY CARE GI VE R HANDBOOK 27
Home Safety Tips For People With
Dementia
If the care receiver has poor judgment,
memory problems, or has a dementia
such as Alzheimers disease, special safety
precautions will help you reduce the risk of
accidents.
Contact any of the organizations listed on
page 23 specializing in dementia for more
information.
Additional Resource
Home Safety for People with Alzheimers Disease
from the Alzheimers Disease
Education and Referral (ADEAR). Call 1-800-
438-4380 or read on-line at www.nia.nih.
gov/Alzheimers/Publications/homesafety.
htm.
Tere are many assistive devices on the
market today that can help with home safety.
Symbols or warning signs on doors,
cabinets and dangerous appliances can
remind a person with dementia of unsafe
areas around the house.
Wandering detection systems that alert
you if the care receiver leaves the room
or home. All usually require that the
care receiver wear a small ankle or wrist
transmitter.
Lights that come on automatically when
a person gets out of their bed or chair or
opens a door during the night.
A No-Start Car Disconnect Switch disables
the car so it will not start.
Te Alzheimers Association Safe Return
is a nationwide identifcation, support and
enrollment program that provides assistance
when a person with dementia wanders and
becomes lost.
Assistance is available 24 hours a day, 365
days a year. If an enrollee is missing, one
call immediately activates a community
support network to help reunite the lost
person with his or her caregiver. Call
1-888-572-8566 for more information.
Comfort Zone is another system using the
latest home safety technology and allows
you to change devices as a persons disease
progresses and safety needs change. Call
your local Alzheimers Association chapter
(contact information on page 23).
Another program called Project LifeSaver
is available in several communities
throughout the state. Project LifeSaver
relies on proven radio technology and a
specially trained search and rescue team.
Clients enrolled in the Project LifeSaver
program wear a personalized wristband
that emits a tracking signal.
To fnd out if Project LifeSaver is available
where you live, visit the website
www.projectlifesaver.org.
28 F AMI LY CAR E GI V E R HANDB OOK
Special programs help nd a person
with dementia.
We all need to fnd pleasure in our daily lives.
Some of the most important care you give
doesnt have anything to do with medicine,
baths, or helping her eat. A laugh or a shared
cup of tea are as important for the care
receivers well-being as any physical care you
provide.
Enjoying lifes pleasures doesnt have to end
when illness or disability strikes. As you
continue your time as a caregiver, stop and
smell the roses along the way. Dont forget to
share their wonderful aroma with the care
receiver.
Good health is more than a healthy body.
You both will live better and enjoy life more
if you care for your emotional and spiritual
needs.
The Importance of Social
Connections
Caring for another person can dramatically
change your social life. It may be hard for
you to get out and socialize. Friends may
no longer come to visit or include you in
their activities. You and the care receiver
may begin to feel lonely and isolated. Te
following ideas will help you both keep up
social connections with others.
Enhancing Daily Life
Encourage people to visit
Getting out to visit friends and family
may be difcult for you. Encourage others
to visit.
Be honest about your limitations. Im
just not able to invite you for dinner, but
wed love to have you stop by for some ice
cream later.
If its hard for others to visit, suggest they
send cards or letters, or make short phone
calls.
Help put visitors at ease. If friends seem
uncomfortable around the person, explain
the illness if that seems helpful. Jills
illness isnt contagious. It does make her
short of breath, so talking tires her out.
A successful visit doesnt have to revolve
around conversation only. Read aloud,
take a walk outside, play cards, or watch
a ball game together. Tese activities are
often more enjoyable for both people.
Senior Centers and Adult Day
Centers
If you care for an older person 60 or older,
she may enjoy organized activities at a
senior center. Senior centers are facilities
in a community where older people can
meet, share a meal, get care services, and
take part in recreational activities. Just
as important, these programs give you
regularly scheduled breaks.
Look in the yellow pages under Seniors or
Senior Services to fnd your local senior
center or visit www.wsasc.org.
F AMI LY CAR E GI V E R HANDB OOK 29
Adult Day Care and Adult Day Health
Care Centers ofer recreational and health
care services for adults who need more
supervision or care assistance than senior
centers can provide.
Senior I & A or Family Caregiver Support
Program staf can help you fnd a center in
your area.
Keeping Your Mind Active
Te brain is like a muscle it needs regular
workouts. Even if the body is failing, most
people can keep a healthy, active mind
throughout life. Here are a few suggestions.
Keep up your social life.
Engage in plenty of stimulating
conversations.
Read a variety of newspapers, magazines,
and books.
Play games like Scrabble, cards and chess.
Take a class on a subject that interests
you.
Begin a new hobby.
Learn a new language.
Do crossword puzzles and word games.
Write letters.
Listen to books on tape. Borrow them
from the library, rent them at video
stores, or trade with friends.
If the care receiver has dementia, some
of these activities may be frustrating. If
they are too difcult or stressful, change
activities or modify them to make them
easier. Find activities you enjoy, and invite
her to participate in some way.
For more information on planning
activities for a person with dementia, visit
www.alz.org (click on Life with ALZ).
30 F AMI LY CAR E GI V E R HANDB OOK
Maintain Spiritual Practices
The search for meaning and spiritual
connection provides a great deal of
support and comfort for many people
experiencing a health crisis or long-term
illness. If religion has been an important
part of your lives, it is important to
continue to create opportunities for
spiritual connection.
The ritual of physically going to church,
temple, or attending any other form of
spiritual activity makes it possible to get
out into the community and connect with
others. If it is difcult for her to leave
home, you can:
Read passages from religious books.
Arrange for a member of the clergy, lay
minister, or parish nurse to visit.
Play sacred music on the radio.
Watch church services on television.
Continue meaningful rituals like prayers
before meals.
Pray together.
Sing or listen to spiritual music.
Use services and liturgies that the
person remembers.
The Importance of Good Nutrition
Good eating habits keeps your body
healthier and improves how you feel.
Making even one improvement in your diet
will be a step toward healthier eating for
you and for the care receiver.
To avoid disease, the 2005 Dietary
Guidelines for Americans recommend:
Eating a diet that includes plenty of
fruits, vegetables, whole grains, and
nonfat dairy products.
Watching calories to prevent weight gain.
Limiting alcohol, and cutting back on
foods high in salt, saturated fat, trans fat,
cholesterol, and added sugar.
Te importance of water
Getting enough fuids each day is one of
the most important dietary additions for
most people. Dehydration is a real danger
for people who are ill or disabled, and it
can easily be avoided. Dehydration is the
leading cause of afternoon fatigue.
Adults need at least 6 to 8 glasses of fuid
each day (unless otherwise instructed by a
health care provider). Fluids can be taken
in many forms, such as water, fruits and
vegetables, juice, milk, broth, or soups.
Ofer drinks frequently throughout the
day. It is also a good idea to keep a glass of
water by his chair or bed.
Be aware that some medications can
dehydrate a person and an older persons
kidneys may need more fuid to function
properly.
Some caregivers believe that cutting
back on liquids will reduce incontinence
(accidents). In fact, too little liquid causes
strong urine which can irritate the
bladder and cause a urinary infection.
If it is difcult for him to swallow water or
clear liquids, slightly thicker liquids like
nectars, cream soups, or milkshakes may
be easier. Commercial thickening agents
like Tickit are available.
Your local Family Caregiver Support
Program staf can talk to you about
the variety of nutrition services and
information they ofer.
When you contact them, also ask about
the Senior Farmers Market Program. Tis
program provides fresh fruit/vegetable
baskets semi-monthly to home-bound
or low income seniors in many counties
throughout Washington State.
F AMI LY CAR E GI V E R HANDB OOK 31
Most adults need at least 6 to 8
glasses of liquid each day.
Additional Resources
For more nutrition information, visit the
American Dietetic Associations website at
www.eatright.org and the Administration
on Agings site at www.aoa.gov (under
elders and families).
The Importance of Physical Activity
Many people with some level of disability or
chronic illness assume it is too late to make
changes. By age 75, one in two women and
one in three men get no physical activity at
all!
However, there is strong, scientifc evidence
that it is rarely too late for healthy life-style
choices to positively, and often greatly,
impact a persons physical, emotional, and
mental health.
As a caregiver, help the care receiver remain
as physically active as possible. Tis can
mean:
Having a good understanding yourself
about the key benefts of remaining
active.
Serving as a role model by making healthy
choices and being physically active.
Encouraging her to talk with her doctor
about this issue and steps she can take to
stay or become more physically active.
The Importance of
Physical Activity For You
Many people think being physically active
means playing sports or going to a gym and
getting hot and sweaty. When in reality,
there is now strong scientifc evidence that
moderate physical activity like taking a
brisk walk for thirty minutes each day most
days of the week is enough to see real
health benefts and prevent certain diseases.
Staying Physically Active
Staying active works best when you:
Match your interests and needs to the
activity. Choose an activity you enjoy enough
to do enthusiastically.
Alternate new activities with old favorites to
keep things fresh.
Get a family member or friend to do the
activity with you.
Put physical activity on your calendar as you
would any other important activity.
Remember that something is better than
nothing. Shoot for shorter, more frequent
sessions rather than the occasional
prolonged session.
Make use of everyday routines. Take the
stairs instead of the elevator, use a rake
rather than a leaf blower, walk or bike to
the corner store instead of driving, or do
stretching exercises while watching TV.
Additional Resources
Exercise & Physical Activitiy: Your Everyday
Guide from the NIA is a free booklet
that gives examples and illustrations on
strengthening, endurance, balance, and
fexibility exercises. Read it online at: http://
newcart.niapublications.org/ (click on
Exercise and Physical Activity) or by calling
1-800-222-2225.
Visit www.altsa.dshs.wa.gov (click
on Services and Information) for more
information and internet links on this subject.
32 F AMI LY CAR E GI V E R HANDB OOK
Caring for others is flled with many mixed
and varied emotions such as feelings
of love, loss, anger, afection, sadness,
frustration, and guilt.
Its not uncommon for family caregivers
to feel lonely and isolated. It takes a lot of
physical, mental, spiritual, and emotional
energy to care for someone else
Youve probably heard it before you need
to take care of yourself! Tat can seem
overwhelming and often requires energy
and support to help make some changes.
The Emotional Challenges of Caregiving
The Importance of
Emotional Support
Its important for you to feel emotionally
supported. Current research is clear that those
who get emotional support while caregiving
fare far better and provide care longer than
those who dont.
Family and friends, while a valuable emotional
support system for some, may not always be
available or particularly helpful now. Tis is
not unusual. Changing family roles, unresolved
past family dynamics, and stress brought on by
the care receivers health, can strain even the
best of support systems and relationships.
Have you created a circle of support by maintaining family
relationships and friendships? Yes q Sometimes q No q
Do you say no to requests for your help if you cant
realistically accomplish them? Yes q Sometimes q No q
Do you ask for help from family or friends when you need it? Yes q Sometimes q No q
Are you open to using community resources or services for
yourself and/or the care receiver? Yes q Sometimes q No q
Are you taking breaks from your caregiving duties? Yes q Sometimes q No q
Are you eating well? Yes q Sometimes q No q
Are you getting enough sleep? Yes q Sometimes q No q
Do you relax each day? Yes q Sometimes q No q
Have you laughed today? Yes q Sometimes q No q
How well are you taking care of yourself?
Take a few moments and honestly assess how you are doing in the following areas of self-care.
If you answer sometimes or no to several of the questions, you may need to look at how well you
are taking care of yourself.
*excerpted from Minnesota Board on Aging
F AMI LY CAR E GI V E R HANDB OOK 33
Its important to pace yourself. Its often
difcult to know how long youll need
to provide care or if your caregiving will
become more demanding over time. Tis job
doesnt come with a job description!
Taking care of yourself is about meeting
your needs so that you are physically,
emotionally, and spiritually ready to meet
the needs of the care receiver. Caring for
your own needs is as important as taking
care of the other person. If you are sick or
become physically or mentally exhausted,
you cant care for someone else.
What Is Good Self Care?
Tere are no rules about good self-care
except it should help you to feel replenished,
comforted, and relaxed. Tere are a variety
of positive ways people use to relax, de-
stress, and refuel their mind/body/spirit.
Schedule time away on a regular basis.
To maintain your own emotional and
physical health it is absolutely necessary
to get relief from your caregiving role.
Stay socially connected and involved
with activities and people that bring you
pleasure.
Keep yourself physically and mentally
healthy.
Make sure you eat a healthy diet and get
some form of exercise as often as possible.
Protect your health. Make sure to
make and keep medical and dental
appointments for yourself.
Be kind to yourself. Give yourself credit
for the things you do well. Treat yourself
to a small reward when youre feeling low.
Tis can be as simple as taking the time
for a long, hot bath.
Be honest with friends and family about
your needs.
Tips for Finding or Making
Time for Good Self Care
Change when you do favorite things. Your
former daily routines are often changed by
caregiving needs. You may need to pick a
new time or day to do your favorite activity.
Change where you do favorite things. Before
you give up your lunch with friends, think
about having your friends bring lunch to your
home. If possible, arrange to have someone
sit with the care receiver.
Change the length of your favorite thing. A
quick walk around the block will never replace
the long walks you once enjoyed. However,
that quick walk can help give you enough of
a break to come back feeling recharged.
34 FAMI LY CARE GI VE R HANDBOOK
Managing Stress
Stress is a normal part of every day life.
Although small amounts of stress can keep
you alert, too much stress for long periods
of time is hard on your body, mind, and
spirit.
Under stress, your body goes on high alert.
Essential body functions, like respiration
and heart rate, speed up. Less essential
functions, such as the immune system,
shut down. Tis puts you at greater risk for
infections, certain diseases, depression, or
anxiety.
Caregivers often experience a higher rate of
stress, anxiety, and depression than those
who arent caregivers.
Symptoms to Watch For
You may be experiencing too much caregiver
stress if you notice any of the following
symptoms listed below.
q Sleeping problems - sleeping too much or
too little.
q Change in eating habits - resulting in
weight gain or loss.
q Feeling tired or without energy most of
the time.
q Loss of interest in activities you used to
enjoy such as going out with friends,
walking, or reading.
q Easily irritated, angered, or saddened.
q Frequent headaches, stomach aches, or
other physical problems.
Source: National Womens Health Information Center,
www.WomensHealth.gov
Tips for reducing stress
Ask for and accept help. (See Asking for
Help from Family and Friends, page 41.)
Set limits and let others know what they
are.
Make sure you have realistic goals and
expectations of yourself and others.
Dont expect to keep a perfect house or
entertain the way you did before you
took on a caregiving role. Holidays may
need to be simplifed and you can divide
up responsibilities between other family
members.
Humor is often the best medicine. Rent a
movie or watch a TV program that makes
you laugh. Read a funny book. Humor can
work wonders for relieving stress.
Find support through understanding
friends, support groups, or a professional
counselor.
Avoid difcult people, for example, overly
critical friends.
Practice deep breathing exercises, yoga, or
meditation.
Write in a journal.
Try closing your eyes and imagining
yourself in a beautiful place surrounded
by your favorite things.
Make a list of your own stress relievers.
Keep it in a handy place and use it!
F AMI LY CAR E GI V E R HANDB OOK 35
Depression
If you suspect you or the care receiver may
be depressed, look at the checklist below.
Check the signs that apply to you or the
care receiver.
Signs of Depression
Physical Signs
q Aches, pains, or other physical
complaints that seem to have no physical
basis.
q Marked change in appetite (or weight loss
or gain).
q Change in sleep patterns (insomnia, early
morning waking, sleeping more than
usual).
q Fatigue, lack of energy, being slowed
down.
Emotional Signs
q Pervasive sadness, anxiety, or empty
mood.
q Apathy (lack of feeling anything at all).
q Decreased pleasure or enjoyment.
q Crying for no apparent reason, with no
relief.
q Indiference to others.
Changes in Toughts
q Feelings of hopelessness, pessimism.
q Feelings of worthlessness, inadequacy,
helplessness.
q Inappropriate or excessive guilt.
q Not able to concentrate, slowed or
disorganized thinking.
q Forgetfulness, problems with memory.
q Indecision, unable to make decisions or
take action.
q Recurring thoughts of death or suicide.
Changes in Behavior
q Loss of interest or pleasure in activities
previously enjoyed, including sex.
q Neglect of personal appearance, hygiene,
home, or responsibilities.
q Difculty performing daily tasks
ordinary tasks are overwhelming.
q Withdrawal from people and usual
activities, wanting to be alone.
q Increased use of alcohol and drugs.
q Increased irritability, arguing, or
hostility.
q Greater agitation, pacing, restlessness,
hand wringing.
q Suicide attempts or talking about suicide.
If you or the care receiver show several of
these signs of depression for more than
two weeks, see a doctor. Te frst step is
a complete physical examination to rule
out any medical problems. A doctor may
also prescribe medication that can help.
Sometimes counseling with a therapist is
useful by itself, or in combination with
medication.
If the care receiver is depressed and
refuses to get help, you can visit a
therapist yourself. Tis can help you better
understand depression and ways to help in
the recovery process.
36 F AMI LY CAR E GI V E R HANDB OOK
Call your local Family
Caregiver Support
Program for support
or referrals.
Suicide
Factors that put a depressed person at high
risk for suicide are:
Severe personal loss, can be their own
health or of someone or something
signifcant in their lives.
Feelings of hopelessness and helplessness.
Living in social isolation.
A prior suicide attempt.
Alcohol or drug abuse.
Expressions of worthlessness, everyone
would be better of if Im gone.
A detailed suicide plan.
A readily available lethal weapon,
especially a gun.
If you feel you or the care receiver is at
serious risk of suicide, get professional help
immediately through a local crisis line, a
mental health clinic, a hospital emergency
room, or the police or other emergency
service.
Grief and Loss
It is common for caregivers to experience
loss not only for yourself but the care
receiver. Losses can include things like the
loss of physical abilities, relationships and
social activities, income, fnancial security,
feelings of purpose and meaning, privacy,
control, and independence.
Grief is a normal reaction to loss. Grief
is a process. Grief does not proceed in a
fxed order any more than life itself does.
Many and varying degrees of emotions
and reactions appear, disappear, only to
reappear again.
Grief is not limited to just your emotions.
Grief can also impact your thoughts,
physical body, relationships, and create
spiritual turmoil.
When moving through the grieving process,
acknowledge, feel, and express all of the
emotions and reactions brought on by the
loss(es) you have had or are experiencing.
Be a good listener to yourself. Let yourself
feel your emotions. What you feel is
valuable information. Try to understand
what your feelings are telling you. Be
patient. Everyone grieves in her own way
and time. Good self care is essential during
this time.
Te following chart from the American
Society on Aging provides some helpful
information.
F AMI LY CAR E GI V E R HANDB OOK 37
Shock/Numbness
This is natures way of
protecting you, or helping you
to cushion your mind and heart
until you are ready to face the
emotions of grief.
Anger
This natural reaction may be
directed at ourselves, others, the
person you lost, or God.
Guilt
These feelings are natural,
although not always realistic.
Relief
A sense of natural relief can
follow the death of someone
you cared for.
Anxiety/Panic
Some anxiety is normal, but if
anxiety persists and affects your
functioning, seek care from a
professional.
What you hear What you feel What may help
Im on automatic pilot.

It seems like a bad
dream.

I feel as if Im walking
in a fog.

It cant really be true.
Why me?
Why her?
Why now?
How dare they do that?
If only ...
Did I do the right thing?
I wish I had
At last it is over
Im glad he is no longer
suffering
I dont have to worry
now
Am I going crazy?
Will I ever feel better?
How can I function?
Like a robot
Bewildered with
no destination

Numb, with frozen
emotions
Irritable
Overreactive to small
things
Others are to blame
Out of control
Responsible for some-
thing that you didnt do
Remorseful
Ashamed
Lighter
More free
Like a weight is lifted
from your shoulders
Afraid to be alone
Worry about the future
Fear something else
will happen
Immobilized
Losing control
Approach shock by:
Taking care of yourself

Eating nutritious meals,
even if only a small
portion

Walking, gardening,
exercising

Release anger by:
Walking, swimming,
exercising
Cleaning, washing
the car
Screaming into a pillow
Work with guilt by:
Talking over feelings
with someone who
will listen
Respond to relief:
With acceptance
not guilt
Address anxiety by:
Talking about feelings
Engaging in physical
activity
Common Grief Responses
38 F AMI LY CAR E GI V E R HANDB OOK
Depression
Some depression is a very
normal part of grief and should
lessen over time.
If depression continues
and interferes with daily
living, or if you are seriously
considering ending your life,
seek professional care at
once.
Sadness/Loneliness
The initial visitors have gone
and returned to their daily lives.
Naturally, the feelings of facing
grief alone arise.


Confusion/ Difculty
Concentrating
Your energy is focused on your
heart, not your head. This stage
will pass.

Grieving Behaviors
All of this is a natural part of the
grief process. You are not going
crazy.
Respond to
depression by:
Talking it over with
others
Doing something
special for yourself or
another
Walking, swimming,
gardening
Attend to
loneliness by:
Going to a support
group to share the
pain and learn new
ways to cope
Treat your
confusion by:
Being gentle with
yourself
Making lists
Asking others to
remind you of impor-
tant dates and times
Respond by:
Accepting yourself
and where you
are today but if
you continue to
experience difculties
with eating or
sleeping or are
seriously considering
ending your life, seek
professional care at
once
What you hear What you feel What may help
Whats the use?
How can I go on?
Life is the pits
Its all hopeless
Im exhausted
The house seems so
empty
Nights are the hardest

I feel like I am losing my
mind
I just cant remember
things
People say things to me
and I dont understand
them
I keep losing my keys
Behaviors can include:
Talking to your loved
one as you go about
your day
Finding yourself repeat-
edly reviewing the
events leading up to the
death
Hearing your loved
ones voice
Hurt, sad, empty, helpless
No desire to eat
Unable to sleep or sleep
more than usual
Headache, backache,
upset stomach
Unable to concentrate
Unable to enjoy
others/no interest in
past pleasures
Overwhelming sadness
and emptiness
Isolated

Disorganized
Absent-minded
Frustrated
Inability to follow a
conversation
Behaviors can include:
Visiting the cemetery
often or refusing to go
at all
Dreaming about your
loved one or becoming
upset that you dont
dream of her/him
F AMI LY CAR E GI V E R HANDB OOK 39
Hospice Care
Hospice care involves a team of professionals
and volunteers who provide medical,
psychological, and spiritual care for people
near the end of life and their families.
Te goal of hospice care is to help make sure
the persons last days are spent with dignity
and quality, surrounded by the people she
loves.
Hospice care can be given in a persons home,
a hospital, adult family home, boarding
home, nursing home, or a private hospice
facility. A doctors referral is needed. Hospice
care providers are listed in the yellow pages
or check with your local Senior Information
and Assistance ofce (see page 45).
Additional Resource
Visit the Washington State Hospice &
Palliative Care Organizations website at
www.wshpco.org to learn more about
hospice or nd a listing of local hospice
organizations.
When You May Need
Professional Help
Tere are some occasions where the stress
of caregiving puts you at risk of harming
yourself or your loved one. Danger signals
may be:
Using excessive amounts of alcohol or
medications like sleeping pills.
Loss of appetite or eating too much.
Depression, loss of hope, feelings of
alienation.
Toughts of suicide.
Losing control physically or emotionally.
Treating the other person roughly or
neglecting her.
If you experience any of these symptoms,
you are carrying too great a burden.
Consider professional counseling or talk
to your doctor about your feelings. Your
doctor may recommend a counselor, or you
can contact your local hospital, ask trusted
friends if they know of someone, or look
in the yellow pages to fnd a psychologist,
social worker, counselor, or other mental
health professional.
Your local Family Caregiver Support
Program staf can be a good resource for
information or referrals.
Adult Abuse
If you have any concern that you may hurt
the person you are caring for, get help
immediately. Tere are many resources
already discussed in this booklet that can
help.
If you suspect someone else is hurting a
vulnerable adult, report it. It is estimated
that 4 out of 5 times abuse or neglect of a
vulnerable adult goes unreported.
To report abuse, call 1-866-ENDHARM
(1-866-363-4276). If the person is in
immediate danger, call 911.
40 F AMI LY CAR E GI V E R HANDB OOK
Asking For Help From
Family And Friends
Although its hard to ask for help, its even
harder to provide care alone! Its not a sign
of weakness to ask for help. Instead, its
an important step in making sure the care
receiver gets the help he needs.
Sometimes caregivers feel like theyre
carrying the whole load and others arent
doing their share. If you feel this way, its
possible that you may have refused help
at an earlier point when the job was less
demanding. It is also possible that other
people in your life:
Tink you have the job under control.
Dont know what to do. People arent
mind readers, but most say yes when
asked.
Are afraid or uncomfortable around
illness or disability. Ofer information
about the condition to make it less
frightening. Its not contagious, or Bill
cant carry on a conversation anymore,
but he loves to have someone read or
sing to him for people who are afraid
or uncomfortable around illness or
disability.
Where to Turn When You Need Help
How to Ask For Help
Like anything new, it may feel
uncomfortable to ask for help. Te following
ideas will help you get started.
Make a list
Figure out what help is needed. Make sure
you think about everything you could
use help with, not just direct caregiving
jobs. Other people may fnd it easier to
do yard work, home repairs, laundry, or
preparing meals than to provide direct
care. Anything that will lighten your load
is important.
Make a list of what needs to be done.
Check of what you can reasonably do.
Decide whats realistic for family and
friends to do.
Find out if there are any services,
programs, and resources available in the
community to help (see page 44).
F AMI LY CAR E GI V E R HANDB OOK 41
Ask for help
Keep your list handy so that youre prepared
to suggest tasks if people call or ask if they
can help. If you dont need their help right
away, thank the person and ask if you can
get back to them when you need help in the
future.
Be specifc. I need someone to take
Sarah to her doctors appointments every
Wednesday.
Be positive. Its a big help when someone
else does the grocery shopping.
Ofer choices. Could you pick up the
prescriptions at the pharmacy tomorrow
or stay here with Armando while I go?
Remember. It may take awhile to feel
comfortable asking for help. But take the
frst step. Come up with a plan and try it
out. Chances are youll fnd that it gets
easier with time.
Hold a family conference
Caregiving can bring families together,
especially when everyone feels they have
an important role to play. Even out-of-town
family members can help by managing the
bills, or helping with household repairs
when they visit.
Holding a family conference is a good way
to get everyone in the same room and come
up with a plan.
It may take more than one conversation
to fgure out what to do. Many small steps
are better then one huge leap that leaves
everyone upset and more confused.
Some family members may want to do
something nice for you because of all you do
for the care receiver. Dont feel ofended or
patronized. Accept it for what it is, a thank-
you for all you do.
Family Caregiver
Support Program (FCSP)
In the Family Caregiver Support Program,
experienced caregiver specialists or
advocates ofer you practical advice and
emotional support. Either in person or by
phone, these professionals listen to your
questions and concerns and understand the
challenges you face.
Washington uses the Tailored Caregiver
Assessment and Referral (TCARE) process
to tailor support and services to your
unique needs.
Te following are some of the many ways
the Family Caregiver Support Program may
be of help to you. It only takes a phone call!
Caregiver Counseling or
Consultation
A counselor or consultant can help you
learn to cope more efectively with the
emotional demands, or even depression,
that can result from caregiving. Tey can
help you work through feelings of grief and
loss, problem solve difcult relationships
or behavioral symptoms, and work through
stress, anger, and guilt related to caregiving.
Help is a
phone call
away!
42 F AMI LY CAR E GI V E R HANDB OOK
Caregiver Training
Powerful Tools for Caregiving is an
example of one educational series developed
specifcally for family members caring
for someone with a chronic illness. You
will learn a variety of self-care tools
and strategies to reduce your stress,
communicate more efectively with family
and healthcare providers, deal with difcult
feelings, and make tough caregiving
decisions.
Caregiver Support Groups
A caregiver support group is a tremendous
source of information and support.
Learning from others who have been in
similar situations to yours will give you new
ideas to cope with trying times. Knowledge
that youre not alone and that others have
gone through what youre going through
brings comfort to many people.
For many caregivers, support groups ofer a
chance to share feelings honestly, without
having to be strong or put up a brave front
for the family. No one understands as well
as a fellow caregiver.
Even if youve never belonged to a support
group before, consider fnding a support
group for caregivers or one that is specifc
to your situation. For instance, there are
groups for people who are caring for a
person who has had a stroke, Alzheimers
disease, cancer, AIDS and many others.
Respite Care
Respite care is a service where another
trained person or staf at a facility provide
short-term care for a few hours to a few
days for your loved one giving you some
time away from caregiving.
Respite care can be in your home, through
an adult day center, or at a residential care
facility.
Information About Services
Tere are so many services, programs, and
resources available that it can be hard to
know where to start or how to get them.
Staf at your local Family Caregiver Support
Program are well acquainted with what
services are available where you live.
Contact Your Local Family Caregiver
Support Program
If any of the caregiver support services
sound interesting to you, call your local
Family Caregiver Support Program.
FAMI LY CARE GI VE R HANDBOOK 43
To nd the number for
your local Family Caregiver
Support Program, call toll-
free 1-800-422-3263 or nd
them online at:
www.altsa.dshs.wa.gov
(click on Find Local Services)
Working With Your Employer
It is estimated that half of all caregivers are
employed full time. If you are an employed
caregiver, you may be struggling to balance
your time and energy between work and home.
In addition to all of the other suggestions
found in this section for important self-care,
the following are some suggestions on how to
work with your employer.
If you think you will need to leave work
temporarily to provide full-time care,
learn about the Family and Medical
Leave Act (FMLA). FMLA provides job
protection for employees who must leave
their jobs for family medical concerns,
such as providing care for a critically ill
family member.
Additional Resources
More information about the Family and
Medical Leave Act is available on-line at
www.dol.gov/whd/fmla/.
Washington States Family Care Act adds
to these rights by giving workers the choice
to use sick leave or other paid time of, if
they have it, when a covered family member
has a serious health condition. For more
information talk to your supervisor or go to
www.lni.wa.gov/WorkplaceRights/.
Long-Term Care Insurance may be available
through your employer that could cover
some care for your parents - ask your
personnel representative. For more
information about long-term care insurance
see page 49.
Help from Community Services
and Programs for the Care
Receiver
Tere are many community programs and
services available that can help the care
receiver with things like:
Physical care such as getting dressed,
preparing meals, help with medications,
personal hygiene, or getting in or out of
the bed, tub, toilet, or the house.
Taking care of the house or apartment
such as light housekeeping, shopping, or
laundry.
Transportation.
44 F AMI LY CAR E GI V E R HANDB OOK
Take advantage of workplace policies
and benefts
Ask about fexible and reduced hours, work
at home, or telecommuting.
Employee assistance programs (referral to
counseling, community services).
Family and Medical Leave Act (allows time
of for caregiving responsibilities).
Dependent Care Assistance Programs
that allow employees to set aside before-
tax dollars to pay for eldercare/caregiving
services.
Talk with your supervisor about your
caregiving issues. Openly and honestly
describe the situation before it becomes a
problem. Its better for your employer to
understand what is happening than draw
her own conclusions.
Keep as clear of boundaries as you can
between work and home. For example, set
limits on non-emergency phone calls from
home. Schedule regular times when you will
call and check in during breaks or lunchtime.
Finding Local Services
Getting started fnding local services can
feel overwhelming. Te solution is to fnd
knowledgeable people who know what is
available where you live. Te organizations
listed below can help.
You can also contact your local Family
Caregiver Support Program staf. Tey
are valuable resources in gaining access to
services for both you and the care receiver.
Senior Information & Assistance (I & A)
I & A is a free information and referral
service for adults age 60 and older and for
family and friends helping care for the older
adult.
I & A is part of your local Area Agency on
Aging (AAA). AAAs were established under
the Federal Older Americans Act in 1973
to help older adults (60 or older) remain in
their home. AAAs are located throughout
the United States and are available in every
county within Washington State.
Local ofces throughout Washington can
help you:
Plan, fnd and get more care, services,
or programs (e.g. transportation, meals,
housekeeping, personal care).
Explore options for paying for long term
care and review eligibility for benefts.
Figure out health care insurance and
prescription drug options.
Get a listing of local adult housing and
assisted living.
Sort through legal issues (e.g. setting up
advance directives, living wills) or make
referrals for legal advice.
Some counties in Washington ofer free
long-term care information, referral, and
assistance for people of all ages through
Aging and Disability Resource Centers.
In these counties, the Aging and Disability
Resource Center includes the information
and resources outlined above for I & A.
Visit www.agingwashington.org and
click on local AAAs. You can also look in
your phone book under seniors or senior
services, or call 1-800-422-3263 and
ask the receptionist to give you the local
number.
Home and Community Services (HCS)
HCS is part of the Aging and Long-Term
Support Administration (ALTSA), an
administration within the Department
of Health and Social Services (DSHS).
HCS ofces are a tremendous resource
and the best place to start for an adult
who may need help paying for long term
care (Medicaid). Look on the back of this
booklet for contact information. For more
information on Medicaid, see page 48.
Benefts Checkup
Benefts Checkup (BCU) is a comprehensive
online service to screen for federal, state,
and some local public and private benefts
for adults ages 55 and over. BCU can help
you connect to programs that help pay for
prescription drugs, health care, utilities, and
other needs. BCU also provides a detailed
description of the programs, contacts for
additional information, and materials to
help successfully apply for each. Visit their
website at www.benetscheckup.org.
F AMI LY CAR E GI V E R HANDB OOK 45
Residential care is a term used to describe a
home or facility where an adult can live and
get help with care in a community setting.
Residential care may be the right decision if:
Te care receiver has care needs that can
no longer be safely met at home.
Te caregiver is emotionally and
physically exhausted and family and
community resources are not enough.
Be prepared
Although the person you care for may not
need residential care now, its wise to prepare
for that possibility. Plan ahead and know
what your options are before a crisis. Many
residential care facilities have waiting lists.
Visiting a facility doesnt mean you have to
choose or decide now. Putting your name on
a waiting list isnt an obligation either.
Adult Family Homes and Assisted
Living Facilities
An adult family home (AFH) is licensed to
provide housing and care services for up
to six adults in a regular house located in a
residential neighborhood. Te AFH may be
run by a family, single person, or business
partners. Te AFH may also hire other
employees. Some AFHs allow pets. In some
homes, multiple languages are spoken.
Assisted Living Facilities (ALFs) are licensed
to provide housing and care services to
seven or more people in a home or facility
located in a residential neighborhood.
All AFHs and ALFs provide housing and
meals (room and board) and assume general
responsibility for the care receivers safety
and care.
Choosing Residential Care: When
Care at Home is No Longer Possible
What additional services are ofered is
diferent for each home and may include:
Help with personal care.
A nurse available on a part-time basis.
Help with or administering of
medications.
If you are exploring adult family homes or
boarding homes, a free booklet Choosing
Care in an Adult Family Home or Boarding
Home (DSHS 22-707) might be of interest
to you.
You can read the booklet on the internet
at www.altsa.dshs.wa.gov (look under
Publications). Tis booklet is available on
the internet in many diferent languages
including Spanish, Russian, Vietnamese,
Cambodian, Chinese, and Laotian.
A listing of AFHs and ALFs can be found
on the internet at www.altsa.dshs.wa.gov
(click on Other Housing Options). Your
local I&A ofce can also help with this.
46 F AMI LY CAR E GI V E R HANDB OOK
Nursing Homes (Facilities)
Nursing homes provide 24-hour supervised
nursing care, personal care, therapy,
nutrition management, organized activities,
social services, room, board and laundry.
Entering a nursing home no longer means
every person stays forever. People also go
to a nursing home for rehabilitation or for
short-term, intensive nursing care. Often
people get better or decide they want to
return home and get services there.
If your loved one ends up needing short-
term nursing home care, plan ahead for
what types of services and support he may
need after leaving the facility to return
home or to another residential care setting.
Depending on your situation, talk to a
hospital discharge planner, nursing home
discharge planner, staf at your local I & A,
or your HCS case manager if the person is
eligible or receiving Medicaid.
Retirement Communities/
Independent Living Facilities
Retirement communities and independent
living facilities are housing exclusively for
adults (normally 55 or older). Te person
is generally healthy and any medical or
personal care can be provided by visiting
nurses or a home health aide. Staf at the
retirement community do not take on the
general responsibility for the safety and
well-being of the adult.
Tere are all kinds of planned retirement
communities from large scale, single family
home developments to smaller-scale, senior
houses or apartments.
Continuing Care Retirement
Community (CCRC)
A Continuing Care Retirement Community
(CCRC) is a residential community for
adults that ofers a range of housing options
(normally independent living through nursing
home care) and varying levels of medical and
personal care services. A CCRC is designed to
meet a residents needs in a familiar setting as
she grows older. People most often move into
such a community when theyre healthy.
A CCRC resident has to sign a long-term
contract that provides for housing, personal
care, housekeeping, yard care and nursing care.
Tis contract typically involves either an entry
fee or buy-in fee in addition to monthly service
charges, which may change according to the
medical or personal care services required.
Fees vary depending on whether the person
owns or rents the living space, its size and
location, the type of service plan chosen, and
the current risk for needing intensive long-
term care. Because the contracts are lifelong
and fees vary, it is important to get fnancial
and legal advice before signing.
To fnd local retirement or continuing care
communities in your area, contact your local
I & A ofce.
F AMI LY CAR E GI V E R HANDB OOK 47
Long-term care is often paid for privately
out-of-pocket (funded through savings plan
annuities, certain life insurance policies,
or reverse mortgages) or with health
insurance. Often, it is a combination of
both.
Medicare
Medicare is a government health insurance
program for people 65 and over, some
people under the age of 65 with disabilities,
and people of any age living with
permanent kidney failure. It pays for many
health care expenses but does not cover
them all.
Medicare has limits on the type of care it
will pay for and for how long. For example,
Medicare or Medigap policies do not pay
for long-term care. Tis includes a stay at a
nursing home, an assisted living facility, or
in-home personal care services.
Contact a Social Security Administration
ofce for a Medicare application and more
information about the program. Look
in the Federal Government section of
the phone book under Social Security
Administration or visit their website at
www.ssa.gov.
Paying for Services or a Care Facility
Additional Resource
You can also fnd more information about
Medicare and a variety of insurance-related
topics at the Washington State Ofce of
the Insurance Commissioner website at
www.insurance.wa.gov (click on Your
Insurance and then Medicare.)
Medicaid
Medicaid is a government health insurance
program available to people with very
limited income and resources. Medicaid can
pay for medical services in your own home
or if you live in a residential care facility
that takes Medicaid residents.
For more information about applying for
Medicaid, contact your local HCS ofce (see
back of booklet for contact info) or visit
the Aging and Disability Administration
website at www.altsa.dshs.wa.gov (click on
Apply for Medicaid).
A free booklet, Medicaid and Options for
Long-Term Services for Adults (DSHS 22-619),
is also available with detailed information
about how to apply for Medicaid.
The Statewide Health Insurance
Benets Advisors (SHIBA) HelpLine
provides free help to people of all ages
with questions about health insurance.
Call them at 1-800-562-6900.
48 F AMI LY CAR E GI V E R HANDB OOK
You can read the booklet on the website
at www.altsa.dshs.wa.gov (click on
Publications) or ask for a printed copy
by calling 1-800-422-3263. Tis booklet is
available on the internet in many diferent
languages including Spanish, Russian,
Vietnamese, Cambodian, Chinese, and
Laotian.
Other Insurance Programs
Long-Term Care Insurance
Long-term care insurance is the primary
insurance that pays for long-term care and is
a private health insurance plan you pay for.
Long-term care insurance covers the costs of
long-term care not covered by other health
insurance. Premiums are usually based on
age, health, length of deductible period,
amount paid, and duration of benefts.
Tere are many plans and they all vary in
eligibility, costs, and services covered. It is
therefore important to understand what you
are buying and whether it will meet your
needs.
Additional Resources
The Washington State Ofce of the
Insurance Commissioners website
has several helpful publications to
help you sort out what type of long-
term care insurance may be right for
you. Visit www.insurance.wa.gov
(click on Your Insurance and then
long term care).
The Statewide Health Insurance
Benets Advisors (SHIBA) HelpLine
provides free help to people of all
ages with questions about insurance.
Call them at 1-800-562-6900.
Veterans Benets
If you are a wartime veteran or surviving
spouse (married at the time of the veterans
death), you may be eligible for a pension,
health insurance or long-term care through
the Department of Veterans Afairs (VA).
Also, the dependent parent of a veteran
killed in service or who dies of a service-
connected disability may be eligible for VA
Dependency and Indemnity Compensation.
To contact the VA, call 1-800-562-2308 or
360-725-2199 (TTY) or visit their website
at www.dva.wa.gov.
F AMI LY CAR E GI V E R HANDB OOK 49
Adults who plan in advance for their
future have the best chance of ensuring
their continued independence and well
being. Planning ahead for your future gives
you more:
Time to think through, clarify, and
communicate your goals and needs.
Control of your choices and options.
Chance of protecting your fnancial
security.
Peace of mind.
Financial Planning
Putting together a fnancial plan today will
help you safeguard your savings and peace
of mind.
Additional Resources
Te federal Medicare website has a
Medicare Long-Term Care Planning Tool
that guides you through some questions
about your situation (completely
confdential) and then ofers personalized
information to help you learn more about
what long-term care services are available,
how much you can expect to pay for long-
term care, and what fnancing options
are available to support your long-term
care costs. Visit their website at www.
medicare.gov/LTCPlanning.
AARP has an extensive section on
investing and retirement planning.
Visit www.aarp.org/work/retirement-
planning/.
Te Womens Institute for a Secure
Retirement (WISER) has several simple,
easy-to-read publications on this topic.
Visit their website at www.wiserwomen.
org (click on Publications).
Planning for Tomorrow
Own Your Future: Planning Guide for Long-
Term Care is a free planning booklet and
CD available from the Administration on
Aging. You can order it or read it from the
website at www.longtermcare.gov. It is
also available in Spanish.
Legal Planning
It is important for all adults to think
through and communicate to loved ones
and health care providers what they want
to happen if medical decisions have to be
made and they can no longer communicate
their wishes.
It is often uncomfortable to talk about
things like money, wills, sickness, and
death. By overcoming your uneasiness now,
you can avoid sometimes insurmountable
problems if a crisis arises and the person is
no longer able to communicate his wishes.
50 F AMI LY CAR E GI V E R HANDB OOK
You can put your mind at ease knowing
you have a plan for the what ifs and a good
understanding of what the care receiver
wants if he is no longer able to make or
communicate his decisions.
Have an open discussion with everyone
involved. Acknowledge that while these are
difcult topics to discuss, it is important to
know what she expects and wants regarding
health care, living arrangements, and end of
life decisions.
Good advance planning for health care
decisions is a continuing conversation about
values, priorities, the meaning and quality
of ones life.
Additional Resource
Consumers Tool Kit for Health Care
Advance Planning from the American Bar
Association is a tool kit with a variety of
self-help worksheets, suggestions, and
resources.
Te tool kit can help you or your loved one
discover, clarify, and communicate what
is important in the face of serious illness.
Visit their website at www.abanet.org/
aging/toolkit/home.html.
Wills
A will is a legal document that outlines
what happens to your property after you
die. A will defnes who is to get the property
and in what amounts. A will can also, if
necessary:
Name a guardian for any minor children
(or pets).
Identify someone else to handle the
property left after death on behalf of
children or others.
Identify an executor to handle property
and afairs from the time of death until
an estate is settled.
Power of Attorney
Tis legal document, signed by a competent
person, gives another person the authority
to handle some or all of the persons afairs.
Depending on how it is written, it can
continue to operate even if the person
becomes incapacitated.
Advance Directives
Advance directives put into writing the type
of medical care, or decisions, you want made
if you are no longer able to communicate
them yourself. All adults should have
advance directives - an accident or serious
illness can happen suddenly.
Few people like to talk about or think about
these things. Not having this discussion or
not having advance directives can place an
even heavier burden on those you love if the
unthinkable happens.
You can download many of the templates
to fll out for most of the directives listed
below at the Washington State Medical
Associations website at www.wsma.org
(click on For Patients).
Learn more about
wills, living wills,
and other advanced
directives at www.
washingtonlawhelp.org.
(click on Understand Your
Legal Issues, then Seniors).
FAMI LY CARE GI VE R HANDBOOK 51
It is possible to complete these forms
without the help of an attorney. Unless
youre sure that you understand all the
options and all the facts, it may be best to
consult with an attorney before drawing up
legal documents (see page 53).
Living Wills Or Healthcare
Directives
A living will is a legal document that
defnes for health care professionals what
type, if any, of medical treatments you
want to prolong your life if an accident or
undiagnosed life threatening illness occurs
and you are unable to communicate your
wishes.
A living will only comes into efect when
you are near death. All adults should have a
living will.
Physician Orders for Life-Sustaining
Treatment (POLST) or Do Not
Resuscitate (DNR)
A POLST form documents what, if any,
medical treatments you want to prolong
your life if you are currently terminally ill.
Your doctor has an end-of-life discussion
with you and translates your wishes into
actual physicians orders on the POLST
form. Having a completed POLST form
helps make sure your wishes are followed by
other medical professionals without delay.
Te POLST form must be an original and
not a copy.
Durable Power of Attorney for
Health Care
A Durable Power of Attorney for Health
Care is a legal document that lets you
identify another person to make health
care decisions for you if you become
unable to communicate what you want.
Normally, a durable power of attorney for
health care only takes efect if you become
incapacitated and only lasts for as long as
you are unable to communicate your own
decisions or wishes.
Guardians
If a person is or becomes incapacitated,
the court my be petitioned to appoint a
legal guardian for him. After a detailed
process and review, the judge signs papers
appointing a guardian. Guardians are
charged to act on the persons behalf and
make decisions that refect the values and
needs of the person. A guardian may also be
appointed to oversee the persons property,
income, and fnances.
Guardianship is expensive and time
consuming and is rarely necessary if other
directives like a durable power of attorney
for health care are in place.
Visit www.washingtonlawhelp.org, click
on Understand Your Legal Issues, then
Seniors.
All adults should have a living will.
52 F AMI LY CAR E GI V E R HANDB OOK
Consult an Attorney
Many people have never hired an attorney
or thought they needed one. A long-term
illness or disability can change lives
dramatically. It is helpful to have expert
advice to avoid possible devastating efects
on you or your family.
You need to determine what kind of lawyer
will be best. A lawyer who practices general
law may be able to do everything thats
needed.
If the fnancial situation is more
complicated, you may need a lawyer with
experience in estate planning and/or
elder law to help you sort through income,
property, bank accounts, and other assets.
Lawyers who specialize in elder law are
also most familiar with disability laws and
with Medicare and Medicaid eligibility and
benefts.
Finding a lawyer
Ask trusted friends and acquaintances for
recommendations. Other professionals like
bankers, accountants, and insurance agents
may also have suggestions. Or, contact:
Your local Senior Information and
Assistance ofce (see page 45).
Coordinated Legal Education Advice
and Referral (CLEAR) - a program of the
Northwest Justice Project that helps low-
income people in Washington with legal
information and referrals. CLEAR Senior
is a similar service for anyone who is 60
or older regardless of income level.
Visit http://nwjustice.org/get-legal-help.
org for an on-line application and phone
numbers.
Additional Resources
Te Washington State Bar Association
website at www.wsba.org/atj/contact/
lawref.htm for referrals.
Te National Academy of Elder Law
Attorneys website has a listing of lawyers
who specialize in elder law at www.naela.
org. Click on Consumers and then Find
an Attorney.
Have And Keep An Inventory
A list of a persons assets and where they
can be found is an important part of
responsible planning for an unexpected
crisis or death. Make a list and update
it regularly. Make sure a trusted person
knows where the list is kept. Encourage
your parent(s) or other loved ones to do the
same.
F AMI LY CAR E GI V E R HANDB OOK 53
54 F AMI LY CAR E GI V E R HANDB OOK
You may order this booklet and other DSHS publications through the Department of
Printings (DOP) General Store. Go to the DOPs website at: www.myfulllment.wa.gov
Publication requests may also be placed by:
Email at fulfllment@prt.wa.gov
Phone at (360) 570-3062
Fax at (360) 664-2048
Make sure to include the name of the publication, publication number (DSHS 22-xxx), and a
contact name and street mailing address for orders placed by email, phone, or fax.
Ordering Publications
Visit the ALTSA website to learn more about any of the topics covered in this booklet.
Any link referenced in this booklet is also included on the site.
In addition, learn more about:
Te types of care services, programs, and resources available and how to fnd them.
Residential housing options for a person who can no longer live at home. Listings by city or
county are available.
State, federal, and local resources that can help pay for care and prescription drugs.
Long term care planning:
- Te legal and fnancial steps necessary to help plan wisely for the future.
- Tips on healthy aging, nutrition, physical activity and keeping your mind active.
Aging and Long-Term Support
Administration (ALTSA) Website
www.altsa.dshs.wa.gov
I will love the light for it shows me the way,
yet I will endure the darkness
because it shows me the stars.
Og Mandino

Home and Community Services Regional Phone Numbers
See map to nd the region you live in. Call the number listed
for your region and ask for the local HCS ofce nearest you.
DSHS 22-277(X) (Rev. 6/13)
REGION 1
509-323-9400
1-800-459-0421
TTY 509-329-3698
Adams, Asotin, Benton, Chelan, Columbia,
Douglas, Ferry, Franklin, Gareld, Grant,
Kittitas, Klickitat, Lincoln, Okanogan, Pend
Oreille, Spokane, Stevens, Walla Walla,
Whitman, and Yakima Counties
REGION 3
253-476-7200
1-800-442-5129
TTY 253-593-5471
Clallam, Clark, Cowlitz, Grays Harbor,
Jefferson, Kitsap, Lewis, Mason,
Pacic, Pierce, Skamania, Thurston,
and Wahkiakum Counties
REGION 2
206-341-7600
1-800-346-9257
TTY 1-800-833-6384
Island, King, San Juan, Skagit,
Snohomish, and Whatcom Counties
Region 2
Region 3
Region 1
PACIFIC
CLALLAM
JEFFERSON
SAN JUAN
MASON
GRAYS HARBOR
THURSTON
LEWIS
PIERCE
SKAMANIA COWLITZ
CLARK
WAHKIAKUM
YAKIMA
KITTITAS
CHELAN DOUGLAS
GRANT
STEVENS
PEND
OREILLE
FERRY
SPOKANE
LINCOLN
ADAMS WHITMAN
FRANKLIN
WALLA WALLA
COLUMBIA
ASOTIN
GARFIELD
BENTON
KLICKITAT
ISLAND
WHATCOM
SKAGIT
SNOHOMISH
KING
KITSAP
OKANOGAN

You might also like